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Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/bioe.12185

Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/bioe.12185
Volume 30 Number 3 2016 pp 173180

WHO SHOULD DECIDE FOR THE UNREPRESENTED?

ANDREW COURTWRIGHT AND EMILY RUBIN

Keywords
best interests, ABSTRACT
ethics committees, Unrepresented patients lack the capacity to make medical decisions for
substituted judgment, themselves, have no clear documentation of preferences for medical treat-
surrogate decision making, ment, and have no surrogate decision maker or obvious candidate for that
unbefriended, role. There is no consensus about who should serve as the decision maker
nrepresented for these patients, particularly regarding whether to continue or to limit
life-sustaining treatment. Several authors have argued that ethics commit-
tees should play this role rather than the patients treating physician, a
common current default. We argue that concerns about the adequacy of
physicians as surrogates are either empirically unfounded or apply equally
to ethics committees. We suggest that physicians should be the primary
decision maker for the unrepresented because of their fiduciary duties
toward their patients. As part of the process of fulfilling these duties, they
should seek the advice of third parties such as ethic committees; but final
end-of-life decision-making for the unrepresented should rest with the treat-
ing physician.

Sean was admitted to the cardiac intensive care unit
(ICU) on an early March morning.1 He had had chest
pain at home and called EMS, who found signs consistent
with a massive heart attack. He was brought to the emer-
gency room, where he had a cardiac arrest requiring defi-
brillation. He underwent a cardiac catheterization, which
showed blockages in his coronary arteries as well as seri-
ously reduced cardiac function. He was transferred to the
ICU heavily sedated on full life support, including a ven-
tilator, a balloon pump to help support his heart func-
tion, and intravenous medications to support his blood
pressure.
Over the next days, he improved enough to come off
the balloon pump and some of the intravenous medica-
tions. Whenever the sedatives were reduced, however,
Sean became unstable, developing arrhythmias that
required defibrillation. Despite his physicians best
efforts, they were unable to successfully wean his sedation
or reduce ventilator support. They believed that the next
1
This is a composite case and does not represent the clinical course of
an actual patient.
step would be to perform a tracheostomy and possibly
implant a defibrillator with the long-term hope that Sean
would eventually come off the ventilator. Because he con-
tinued to have severely reduced heart function, however,
they were unsure whether he would be able to safely
tolerate the procedure. They also worried that his short
term mortality related to heart failure was high enough
that performing a tracheostomy would only keep him
alive long enough to die from his severely compromised
medical condition.
Under these circumstances, the medical team would
usually turn to a patients family or surrogate decision
maker to help provide guidance about his or her goals for
ongoing treatment, including whether the expected
quality of life following these interventions would be
acceptable to the patient. In Seans case, however, despite
extensive efforts, the team had not been able to find
anyone to play that role. Seans parents had passed away
many years before and he had no siblings or distant rela-
tives. He had never married and did not have children. He
lived alone, worked from his home as a freelance copy
editor, and was not involved in any religious or commu-
nity organizations. There were no clear surrogate deci-
sion makers to whom the team could turn.

Address for correspondence: Andrew Courtwright, Division of Pulmonary and Critical Care Medicine Center for Chest Disease, 15 Francis Street
Boston, MA 02115. Phone (617) 732-6770 Fax (617) 582-6102. Email: acourtwright@partners.org

2015 John Wiley & Sons Ltd

2174 Andrew Courtwright and Emily Rubin
Patients like Sean have been labeled unrepresented or
unbefriended. Members of this group lack the capacity to
make medical decisions for themselves and have no legal
or surrogate decision maker or any obvious candidate for
that role.2 The unrepresented come to a catastrophic
medical event without having provided clear preferences
about life-sustaining treatment and without having des-
ignated a surrogate decision maker. When, as in Seans
case, that event takes away their decision-making capac-
ity, either permanently or for the foreseeable future, their
healthcare team must decide about current and future
medical interventions for them. Up to 16% of patients in
United States ICUs fall into this category and questions
about surrogate decision making for the unrepresented
account for a growing portion of hospital ethics commit-
tee consultation cases.3
There are many guidelines and policies about how to
approach decision making for these patients, primarily
focusing on exhausting all efforts to discover possible
surrogates, identifying friends or community members
who could provide information on the patients life
before hospitalization, and reviewing any prior contacts
with the medical community during which the patient
may have discussed preferences regarding medical inter-
vention. While some American states emphasize the need
for courts or court-appointed guardians to give consent
for continuation or limitation of treatment, in up to 80%
of ICU cases, it is the patients treating physician who
makes this judgment.4 Several recent articles in high
profile journals have challenged the current state of
affairs, arguing that ethics committees should have this
responsibility with the primary physician playing an advi-
sory role, particularly regarding continuing or limiting
life-sustaining treatment.5 In what follows, we will
examine these claims, arguing that physicians are the
appropriate decision makers for the unrepresented in
these circumstances. Our primary focus will be on
decision-making standards for unrepresented patients in
the United States, although we will use international
examples to model different approaches.
2
N. Karp & E. Wood. Incapacitated And Alone: Healthcare Decision
Making For Unbefriended Older People. Washington, DC: American
Bar Association Commission on Law and Aging; 2003.
3
D. White, et al. Decisions To Limit Life-Sustaining Treatment For
Critically Ill Patients Who Lack Both Decision-Making Capacity And
Surrogate Decision Makers. Crit Care Med 2006; 34: 20532059;
K. Swetz, et al. Report Of 255 Clinical Ethics Consultations And
Review Of The Literature. Mayo Clin Proc 2007; 82: 686691.
4
White et al., op. cit. note 3; R. Bandy, et al. Medical Decision-Making
During The Guardianship Process For Incapacitated, Hospitalized
Adults: A Descriptive Cohort Study. J Gen Intern Med 2010; 25: 1003
1008.
5 6
D. White, et al. Ethical Challenge: When Clinicians Act As Surro-
gates For Unrepresented Patients. Am J Critic Care 2012; 21: 202207;
T. Pope. Making Medical Decisions For Patients Without Surrogates.
N Engl J Med 2013; 369: 19761978.
CURRENT DECISION MAKING
STANDARDS FOR THE
UNREPRESENTED
The unrepresented typically come from one of three
groups. First, they may be members of marginalized
populations such as the homeless or the mentally ill, who,
by virtue of their social circumstances or psychiatric
comorbidities have become estranged from their possible
surrogates. Alternatively, the peregrination common to
these populations may make it difficult or impossible to
identify family or friends who could serve as surrogates.
Second, they may be people living in such a way that, by
choice or life history, they do not have anyone who could
obviously serve as a surrogate decision maker. As in
Seans case, their parents or siblings may have passed
away, they may not have their own families, and they
may lack close friends or communities. Third, they may
be elderly patients who have outlived their families and
fallen into a state of diminished capacity such as demen-
tia. Unless they have completed an advance directive or
have designated a healthcare proxy, they will also count
as unrepresented.
The basic ethical principles underlying surrogate
decision-making standards are relatively uniform across
these populations, relying on either substituted judgment
or best interest. Attempts should be made to develop an
understanding based on lived or expressed values of what
the patient would have wanted in the current situation if
he or she were able to make his or her own decisions. If
there is insufficient or contradictory information to make
that assessment, then the risks and benefits of alternative
treatment plans should be considered and a judgment
should be made about what is in the patients best inter-
est. Despite agreement on these basic ethical standards,
however, there is considerable debate about who should
make these assessments and actually decide for the
unrepresented.
Current laws, institutional policies, and organizational
recommendations and standards regarding limitation or
continuation of life-sustaining treatment vary depending
on to which of the above three groups the unrepresented
patient belongs. For example, Texas and New York have
laws authorizing a committee of trained volunteers to
make medical decisions on behalf of unrepresented
patients with mental retardation, mental illness, or devel-
opmental disability.6 These committees, which typically
consist of patient advocates, health professionals, and
lawyers, have statutory authority to make major medical
decisions for patients in these populations. They are not,
Texas Health & Safety Code. Subchapter C: Surrogate Consent for
ICF-MR Clients. Section 597.043; T. Pope & T. Sellers. Legal Briefing:
The Unbefriended: Making Healthcare Decisions For Patients Without
Surrogates (Part 2). J Clinic Ethics 2011; 23: 177192.
C 2015 John Wiley & Sons Ltd
V
 Who should
Who should Decide
Decide for
for the
the Unrepresented?
Unrepresented?
however, always empowered to make decisions about
limitation of life-sustaining treatment.7
Rather than specific committees, several states, includ-
ing Virginia, Florida, Kentucky, and Illinois, have devel-
oped public guardianship programs, particularly for
older, incapacitated individuals or those with mental
retardation or developmental disability.8 These guardians
are typically considered decision makers of last resort
although many statutes require guardianship to be
pursued for questions about life-sustaining treatment if
all efforts to identify a surrogate have failed. The guardi-
anship appointment process, however, can be extremely
slow and public guardians are often overworked or
simply not available. Because of the discordance between
the speed with which medical decisions need to be made
and the speed with which the guardianship process func-
tions, it is common that physicians serve as surrogate
decision-makers, even in states that require guardians to
play this role.9
Rather than having specific committees or court-
appointed guardians decide for subpopulations among
the unrepresented, some states such as North Carolina,
Alabama, Arizona, and Connecticut give broad statutory
authorization for healthcare decision-making to the
patients attending physician.10 These laws often require
input from a hospital ethics committee, a second physi-
cian, or an independent clinician or clergy member,
although some states, such as North Carolina, default
entirely to an individual attending physician.11 There are
also varying limits on the types of decisions that these
laws authorize physicians to make. Some allow limitation
of life-sustaining treatment (Connecticut), others allow
do not resuscitate orders but not withdrawal of treatment
(New York), and some are restricted to decisions not
involving withdrawal of nutrition or hydration
(Arizona).12
All of these statutory requirements are supplemented
by hospital and institutional policies regarding decisions
about life-sustaining treatment for the unrepresented.
For example, the Veterans Affairs Health System
requires the involvement of a multi-disciplinary commit-
tee, the Chief of Staff, the facility Director, and, in certain
cases, regional counsel when an attending physician
requests limitation or withdrawal of life-sustaining treat-
7
New York Mental Hygiene Law. Surrogate Decision-Making For
Medical Care And Treatment. Article 80.
8 13
T. Miller, et al. Treatment Decisions For Patients Without Surro-
gates: Rethinking Policies For A Vulnerable Population. J Am Geriatr
Soc 1997; 43: 369374.
9
White et al., op. cit. note 3.
10
S. Varma & D. Wendler. Medical Decision Making For Patients
Without Surrogates. Arch of Intern Med 2007; 167: 17111715.
11
North Carolina General Statute. Procedures For Natural Death In
The Absence Of A Declaration. 90322(b).
12
Karp and Wood, op. cit. note 2.
C 2015 John Wiley & Sons Ltd
V 2015 John Wiley & Sons Ltd
175
3
ment.13 Academic hospital ethics committees often
have detailed protocols for advising attending physicians
on limitation of life-sustaining treatment in the
unrepresented.14 In most cases, as with state statutes, the
emphasis is on the decision to limit or stop life-sustaining
treatment and there is a basic presumption that physi-
cians should pursue urgent or emergent life-sustaining or
saving interventions without the more complex reflec-
tions required to withdraw these therapies. Institutional
protocols on limiting treatment typically emphasize con-
structing a broad portrait of an individual to recreate his
life outside of the hospital. This, in turn, can provide
information on substituted judgment and how the patient
might weigh various risks and benefits of treatment. It is
rare, however, for the committee to explicitly serve as the
surrogate decision maker.
WHO DECIDES AND WHO ADVISES?
While some commentators have praised this diversity of
approaches as meeting the needs of local populations,
recent articles in high profile journals have challenged
policies and practices that designate or default to physi-
cians as the final decision maker for the unrepresented.
For example, Thaddeus Pope has argued that multidisci-
plinary ethics committees, operating independently from
the patients health care facility, should make treatment
decisions for unrepresented patients.15 And Douglas
White and colleagues have argued that, authority for
decisions should be with someone other than the treating
clinicians, and perhaps someone not encumbered by rela-
tionships with the institution.16 While no one has claimed
that physicians should be removed entirely from the
decision-making process, they have proposed that the
final decision rest with external groups. Physicians would
serve as advisers not deciders.
This conclusion depends on several arguments against
physicians providing substituted judgment, including:
poor correlation of physician decisions with patient pref-
erences; potential for biased or arbitrary decision
making; lack of ethical expertise; and potential conflicts
of interest. We will suggest that these arguments are
either empirically unfounded or apply to other possible
surrogate decision makers and so do not establish that
ethics committees are better situated to provide substi-
tuted judgment.
Veterans Administration. Protection of patient rights 17.32
Informed consent and advance care planning. Available at: http://
www.benefits.va.gov/warms/docs/regs/38CFR/BOOKI/PART17/
s17_32.DOC [cited 2015 April 7].
14
I. Hyun, et al. When Patients Do Not Have A Proxy: A Procedure
For Medical Decision Making When There Is No One To Speak For
The Patient. J Clinic Ethics 2006; 17: 323330.
15
Pope, op. cit. note 5, p. 1977.
16
White et al, op. cit. note 5, p. 206.
4176 Andrew Courtwright and Emily Rubin
First, several authors note that physicians are poor
predictors of their patients preferences for medical inter-
ventions. In studies in which attending physicians and
their patients are asked about treatment preferences such
as cardiopulmonary resuscitation, feeding tube place-
ment, or prolonged mechanical ventilation, physicians
are only able to predict their patients responses with
5070% accuracy.17 Thus White et al. argue, if physicians
are that bad at predicting treatment preferences when
they actually know and can communicate with their
patients, they are probably just as bad or worse when it
comes to the unrepresented. Ethics committees, Pope
argues, have a greater ability to discover and diligently
represent the patients wishes.18
This is, however, an empirical claim and there are, to
our knowledge, no studies assessing an ethics committees
ability to predict patient treatment preferences. What is
clear from the existing literature is that no one, including
a patients own chosen surrogate, is particularly good at
predicting preferences for medical interventions. While
surrogates are generally better than physicians, their
accuracy still falls around 6070% for most medical
decisions.19 Actuarial models appear to predict prefer-
ences for life-sustaining treatment equally well.20 In this
context, some authors have suggested that using actuarial
models for the unrepresented would be more appropriate
than any human surrogate.21 There is no obvious reason
why ethics committees would more accurately represent
an unrepresented patients wishes than a treating physi-
cian. The modest correlation between physician predic-
tions of patient preferences for medical intervention and
actual patient preferences is not sufficient to establish
that another party should make these decisions.
Second, some authors have raised concern that allow-
ing physicians to decide for the unrepresented could lead
to biased or arbitrary decisions. With regard to bias,
Pope notes that, without a separate surrogate. . .biases
related to disability, race, and culture all remain
unchecked.22 Although numerous articles have raised the
possibility of racially biased decision-making in medical
futility and substituted judgment, there are, to our knowl-
edge, no studies that have substantiated this concern.
While racial and ethnic minorities are disproportionately
17
A. Seckler, et al. Substituted Judgment: How Accurate Are Proxy
Predictions? Ann Intern Med 1991; 115: 9298; G.S. Fischer, et al.
Patient Knowledge And Physician Predictions Of Treatment Prefer-
ences After Discussion Of Advance Directives. J Gen Intern Med 1998;
13: 447454.
18
Pope, op. cit. note 5, p. 1977.
19
D. Shalowitz, et al. The Accuracy Of Surrogate Decision Makers: A
Systematic Review. Arch Intern Med 2005; 166: 493497.
20
W. Smucker, et al. Modal Preferences Predict Elderly Patients Life-
Sustaining Treatment Choices As Well As Patients Chosen Surrogates
Do. Med Decis Making 2000; 20: 271280.
21
Varma and Wendler, op. cit. note 10.
22
Pope, op. cit. note 5, p. 1977.
represented in cases involving ethical conflict at the end
of life, neither race nor ethnicity appears to predict the
outcome of these cases.23
It might be argued that, merely by virtue of having
multiple members, ethics committees could minimize
bias. It is rare, however, for ethics committees to have the
same ethnic, religious, and socioeconomic diversity as the
communities they serve and there are little data to answer
questions about the impact of disability, race, or age on
ethics committee decision making.24 Furthermore, indi-
vidual physicians rarely care for patients in a vacuum and
often review treatment plans at multidisciplinary ICU
meetings that include nurses, case managers, and consult-
ing physicians from other subspecialties.
With regard to the potential for arbitrary decision-
making, White et al. argue that allowing physicians to be
the final decider creates the potential for similarly situ-
ated patients to receive very different treatment. . .this
is ethically problematic because justice requires that
patients who are similar in ethically relevant ways receive
similar treatment.25 It is well established that different
physicians have different thresholds for considering inter-
ventions futile or for limiting life-sustaining treatment.26
However, we currently tolerate this variability when we
allow individual physicians to decide whether to offer
potentially life-sustaining interventions such as major
surgery in a frail patient, extracorporeal membrane oxy-
genation in a patient with end-stage lung disease, or
dialysis in a patient in a minimally conscious state. This
variability, which in the aggregate is likely to have a far
greater impact on patient outcomes than decision-
making for unrepresented patients, has not prompted
commentators to argue that an external committee not
affiliated with the treating hospital should make these
decisions. In addition, the current structure of ICU staff-
ing means that most patients are cared for by more than
one attending during their stay, limiting the risk of
morally problematic arbitrariness. More importantly,
however, merely designating an external party such as an
inter-institutional ethics committee to decide for the
unrepresented does not address the potential for arbi-
23
S. Muni, et al. The Influence Of Race/Ethnicity And Socioeconomic
Status On End-Of-Life Care In The ICU. CHEST 2011; 139: 1025
1033; D. Casarett & M. Siegler. Unilateral Do-Not-Attempt-
Resuscitation Orders And Ethics Consultation: A Case Series. Crit Care
Med 1999; 27: 11161120. A. Courtwright, et al. Experience with a
Hospital Policy on Not Offering Cardiopulmonary Resuscitation
Believed More Harmful Than Beneficial. J Crit Care 2015; 30: 173177.
24
A. Courtwright, et al. The Changing Composition Of A Hospital
Ethics Committee: A Tertiary Care Centers Experience. HEC Forum
2014; 26: 5968; E.Rubin & A. Courtwright. Medical Futility Proce-
dures: What More Do We Need To Know? CHEST 2013; 144: 1707
1711.
25
White et al., op. cit. note 5, p. 204.
26
T. Huynh, et al. The Frequency And Cost Of Treatment Perceived
To Be Futile In Critical Care. JAMA Intern Med 2013; 173: 18871894.
C 2015 John Wiley & Sons Ltd
V
 Who should
Who should Decide
Decide for
for the
the Unrepresented?
Unrepresented?
trary decisions. Without also identifying membership and
process standards something that has been notoriously
difficult to do for preexisting ethics committees the mere
involvement of a third party does not mean the final
decision would be any less arbitrary than that of an indi-
vidual clinician.27
Third, commentators have raised concern that physi-
cians do not possess the requisite expertise to make deci-
sions for unrepresented patients. White et al. argue that
deciding for the unrepresented is a complex social,
ethical, and legal process and that it is unreasonable to
expect the average clinician to possess the diverse exper-
tise needed for sound decision making in this situation.28
Although their licensing process requires critical care
clinicians to have ethics and end-of-life training at every
stage of their education including medical school, resi-
dency, and fellowship, it is true that this is insufficient to
provide a comprehensive ethics expertise. This is one
reason that clinicians commonly turn to social workers,
nurses, the legal department, and their colleagues to
provide broad input in deciding for the unrepresented. It
would be a mistake, however, to think that ethics com-
mittees always provide the expertise that ideally would be
brought to bear in these cases. As an unregulated profes-
sion, members of contemporary ethics committees do not
have specific ethics education requirements. For example,
a 2007 national survey of ethics committees suggested
that the majority of committee members have no formal
education in bioethics or clinical ethics.29 In the absence
of evidence that these committees are better informed
about relevant ethical considerations than conscientious
clinicians, we cannot conclude that they should be the
final decision makers.
Fourth, authors argue that physicians may have con-
flicts of interest or competing obligations that would
prevent them from being appropriate decision-makers. In
advancing this claim, both Pope and White et al. note
that existing probate law bars competent patients from
appointing a treating physician as his or her health care
proxy or legal representative.30 This is, they suggest,
partly because a physician surrogate decision maker
would have many potential conflicts of interests. For
example, in addition to considering what is in the
patients best interest, physicians have an obligation to
manage resources in a cost-conscious manner, which
27
M. Aulisio, et al. Health care ethics consultation: nature, goals, and
competencies. A Position Paper from the Society for Health and
Human Values-Society for Bioethics Consultation Task Force on
Standards for Bioethics Consultation. Ann Intern Med 2000; 133: 5969.
28
White et al., op. cit. note 5, p. 204.
29
E. Fox, et al. Ethics Consultation In United States Hospitals: A
National Survey. AJOB 2007; 7: 1325.
30
A. Rai, et al. The Physician As A Health Care Proxy. Hastings Cent
Rep 1999; 29: 1419.
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V 2015 John Wiley & Sons Ltd
177
5
creates a conflict of interest.31 Although this may be a
theoretical possibility, there is little evidence that physi-
cians think about resource allocation issues when decid-
ing, for an individual patient, whether ongoing treatment
is futile.32 Furthermore, conflicts of interest related to
distributive justice and resource allocation have also been
raised about judgments made by ethics committees, par-
ticularly those affiliated with the treating hospital.33
Fifth, critics of allowing physicians to decide for the
unrepresented worry that physicians may have personal
financial conflicts of interest in deciding whether to con-
tinue or limiting life-sustaining treatment for these
patients. White et al., for example, write, [this] potential
conflict could lead to overtreatment of patients in fee for
service reimbursement models and undertreatment in
capitated models.34 There are, to our knowledge, no
studies that substantiate this concern and hospital ethics
committees have also been charged with potential finan-
cial conflicts of interest, particularly those groups whose
members include hospital administrators.35 Finally,
White et al. raise a concern that, because clinicians are
interested in limiting disagreement amongst members of a
multidisciplinary care team and that end-of-life cases
often generate these conflicts, they will be pressured to
consider team dynamics instead of the patients best
interest. This potential conflict of interest, however,
already exists when ICU teams have to decide whether to
offer certain interventions to surrogates who are making
decisions about life-sustaining treatments. It is not clear,
therefore, why considerations of team contentment
should automatically lead to a third-party decision
maker.
In summary, the primary objections that have been
raised against physicians as decision-makers for the
unrepresented are either empirically unfounded or also
apply to hospital ethics committees. In the absence of
additional studies to the contrary, we do not believe these
theoretical concerns are sufficient to rule out physicians
as surrogate decision makers or to establish that ethics
committees should play this role. We do not believe that
there is sufficient reason to revise the way that decision
making currently occurs for a majority of unrepresented
patients.
There may be an idealized version of an ethics commit-
tee that would address all of the challenges we have
raised. Given, however, that such groups do not exist in
their envisioned form, there is no reason to defer to their
current manifestation, no matter how much better they
31
White et al., op. cit. note 5, p. 204.
32
Huynh et al., op. cit. note 26.
33
R. Veatch. Terri Schiavo, Son Hudson, and Nonbeneficial Medical
Treatments. Health Affairs 2005; 24: 976979; R. Truog. Tackling
Medical Futility In Texas. New Engl J Med 2007; 357: 13.
34
White et al, op. cit. note 5, p. 204.
35
Truog, op. cit. note 33.
6178 Andrew Courtwright and Emily Rubin
may be in theory. At a minimum, clear standards for
ethics committees composition and process need to be
identified before we can fully evaluate the suitability of
ethics committees as default deciders. Even then, we
believe that such committees should only play an advi-
sory role to clinicians caring for the unrepresented, the
topic to which we now turn.
FIDUCIARY DUTIES AND
UNREPRESENTED PATIENTS
Some authors have suggested that the primary reasons
why physicians should decide for the unrepresented are
related to their efficiency and their ability to understand
the benefits and burdens of ongoing medical treatment.36
We do not believe that these arguments are strong
enough, by themselves, to establish that physicians
should be the final decision-makers. It is true that, of the
various possible surrogate decision-makers, clinicians
would be the most efficient choice. They see the
unrepresented patient every day, have an understanding
of his or her clinical trajectory, and may have been
involved in efforts to identify a surrogate. In contrast,
third parties may take significant time to convene and
need to develop a sense of the patients clinical and social
circumstances. It is not clear, however, that efficiency is a
virtue in deciding for the unrepresented, given the com-
plexity and moral implications of either continuing or
limiting life-sustaining treatment. The time required to
gather a third party may, if it is not excessively burden-
some, be critical in allowing the patient to declare his or
her clinical trajectory or in developing a more full portrait
of their pre-hospitalization life. This is particularly true in
neurologic injury where prognostication can be difficult
in the early days of ICU hospitalization.
Second, it has been argued that, because physicians are
in the best position to understand the burdens and ben-
efits of treatment, they are in the best position to decide
for the unrepresented.37 Studies have consistently shown,
however, that physicians have an inaccurate appreciation
of the outcomes of many of the interventions they
provide. For example, physicians underestimate one-year
survival rates for patients requiring tracheostomy place-
ment for prolonged mechanical ventilation. Almost 60%
of patients in this population are alive at one year; phy-
sicians expect 40% of patients to fall in this group.38 Simi-
larly, physicians tend to underestimate quality of life
scores in disabled, long-term survivors of critical illness,
36
R. Volpe & D. Steinman. Peeking Inside The Black Box: One Insti-
tutions Experience Developing Policy For Unrepresented Patients.
Hamline Law Rev 2013; 36: 265517.
37
Ibid.
38
C. Cox, et al. Expectations And Outcomes Of Prolonged Mechanical
Ventilation. Crit Care Med 2009; 37: 28882894.
suggesting an incomplete assessment of the burdens of
long-term debility.39 The claim that physicians are best
positioned to judge the burdens and benefits of medical
interventions has to be tempered by an acknowledgement
that there is significant discordance between the out-
comes they expect and the actual outcomes.
What other positive claims can we advance for allow-
ing physicians to decide for the unrepresented? We
believe that physicians have a fiduciary duty to
unrepresented patients that obligates them to act as the
surrogate decision maker, an obligation that cannot be
transferred to or superseded by a third party such as an
ethics committee. While it is appropriate for ethics com-
mittees to advise physicians on how to fulfill their fiduci-
ary duties, the committee cannot discharge these duties.
It is well established in common law and medical ethics
that the physician and patient have a fiduciary relation-
ship that carries with it fiduciary duties.40 In general,
fiduciary duties spring from a type of relationship in
which one party is entrusted with the welfare of someone
(i.e. the beneficiary) who is relatively vulnerable.41 These
relationships have three characteristics: 1) the benefi-
ciarys vulnerability makes her dependent on the fiduci-
ary; 2) the fiduciary has superior knowledge and skills
related to the beneficiarys vulnerability; 3) the benefi-
ciary trusts the fiduciary to use their knowledge and skills
to promote the best interests of the beneficiary, specifi-
cally with regard to his or her vulnerability.
For the physician-unrepresented patient relationship
at the time of an ICU hospitalization, the patients criti-
cal illness makes him dependent on his physician, the
physicians training and access to medical resources
places her in a position of superior knowledge and skills
related to the critical illness; and the patient (implicitly)
trusts the physician to use her training and resources to
promote his best interests relating to his illness. This is
sufficient to establish a fiduciary relationship between the
two parties in this context. The specific obligations that
follow from this fact are organized around the idea that
the fiduciary must act to protect and promote the best
interests of the beneficiary. Protecting and promoting,
however, is not the same thing as defining and fiduciary
duties do not license physicians to act in whatever
manner they see fit. For patients who are able to define
their treatment preferences or best interests or have
39
A. Janse, et al. Quality Of Life: Patients And Doctors Dont Always
Agree: A Meta-Analysis. J Clin Epi 2004; 57: 653661.
40
T. Frankel. Fiduciary Law. California Law Rev 1983; 71: 795836; T.
Hafemeister & S. Bryan. Beware Those Bearing Gifts: Physicians Fidu-
ciary Duty To Avoid Pharmaceutical Marketing. U of Kansas Law Rev
2008; 57: 491537.
41
T. Hafemeister & R.M. Gulbrandsen Jr. Fiduciary Obligation Of
Physicians To Just Say No If An Informed Patient Demands Services
That Are Not Medically Indicated. Seton Hall Law Rev 2009; 39: 335
386: 368.
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 Who should
Who should Decide
Decide for
for the
the Unrepresented?
Unrepresented?
surrogates who are able to do so, specific fiduciary duties
are organized around these preferences/interests. These
include a mix of positive and negative duties: to obtain
informed consent from a patient or surrogate when avail-
able, to protect confidentiality, to minimize conflicts of
interest, not to abandon the patient, and not to recom-
mend or pursue treatments that will not benefit the
patient.42
For unrepresented patients the central issue is that the
best interests of the beneficiary have not been clearly
defined and there is no obvious surrogate to provide
input on what those interests might be. This does not,
however, excuse the fiduciary from attempting to eluci-
date those interests or grant him or her the authority to
decide on these interests arbitrarily or according to per-
sonal bias. An obligation not to pursue treatments (for
example, tracheostomy or dialysis at the end of life) that
may not benefit the patient cannot be discharged until
reasonable efforts have been made to assess whether the
patient might consider such treatments, on balance,
beneficial.
In order for physicians to fulfill their fiduciary obliga-
tions to an unrepresented patient they must make all
reasonable efforts to understand what the patient might
have considered as in his or her best interest or how he or
she would have decided in these circumstances. While
they may be able to fulfill this obligation through their
own efforts and professional judgment, in almost all
cases, this will (and does) involve information that other
parties social workers, cases managers, and even ethics
committees gather about the patients values and pat-
terns of behavior.43 These groups may also have impor-
tant institutional memory regarding how similar cases
have been decided in the past or which institutional poli-
cies apply and may provide additional resources in the
search for family members or other possible surrogates.
In addition, requiring individual physicians to articulate
their decision-making process to ethics committee
members or other third parties increases transparency,
which by itself guards against arbitrary or clearly con-
flicted decision making. Once the appropriate informa-
tion has appropriately been collected and discussed a
decision can be made as to whether continuing life-
sustaining treatment would benefit the patient or would
be consistent with what the patient would have wanted.
Only then is the appropriate fiduciary duty discharged.
Despite the potential importance of their adjunctive
role, ethics committees whatever their origin and
42
Council on Ethical and Judicial Affairs, American Medical Associa-
tion. Opinion 10.01 - Fundamental Elements of the Patient-Physician
Relationship. Available at: http://www.ama-assn.org/ama/pub/
physician-resources/medical-ethics/code-medical-ethics/opinion1001
.page [cited 2015 April 7].
43
N. King. The Ethics Committee As Greek Chorus. HEC Forum 1996;
8: 346354.
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7
composition do not have a fiduciary relationship with an
unrepresented patient. Critical illness does not make a
patient dependent on an ethics committee in a manner
similar to his dependence on a physician. Nor do ethics
committees have specific knowledge or skill sets related to
critical illness. It could be argued that a suitably consti-
tuted ethics committee would have specific knowledge
related to the patients vulnerability, construed more
broadly than medical vulnerability because of illness. For
example, such a committee might have information about
what other members of the regions homeless population
have chosen in similar circumstances. In this way, they
might claim to have a fiduciary relationship with
unrepresented patients because of their knowledge
related to the patients social vulnerability. There is,
however, no presumption of trust in the ethics
committee-patient relationship, as this is not an estab-
lished social interaction akin to the patient-physician
relationship. Without this trust the vulnerable party
would not defer to the fiduciary to use their knowledge
and skills to promote the best interests of the beneficiary.
Ethics committees do not, therefore, have fiduciary duties
toward the unrepresented.
Ethics committees only develop obligations to specific
patients after a physician consults the committee. And, in
general, this consultation occurs because the physician is
attempting to fulfill her fiduciary duty to the patient. By
turning to a third party who can provide additional infor-
mation and perspectives on the burdens and benefits of
ongoing life-sustaining treatment, the physician is
attempting to make the most well-informed judgment
about what the patient would want or what is in the
patients best interest. This makes any duties that the
ethics committee has to the patient derivative from
the physicians obligations.
WHAT IS THE ROLE OF THIRD PARTIES?
We have argued that Pope and White et al. do not
provide sufficient justification for designating ethics com-
mittees as the final decision-maker for unrepresented
patients. Individual physicians have fiduciary obligations
toward these patients that cannot be deferred to or dis-
charged by third parties. We are not, however, claiming
that physicians should act without any further input
from third parties such as ethics committees. Because
unrepresented incapacitated patients constitute a vulner-
able group with diminished autonomy, they deserve
special protection. Society at large has a legitimate inter-
est in ensuring that physicians conscientiously discharge
their fiduciary obligations to the unrepresented. This, in
turn, creates space for third party involvement.
To this end, decision-making about the care of
unrepresented patients should be transparent and
8180 Andrew Courtwright and Emily Rubin
physicians should explain their approach to critical deci-
sions regarding life-sustaining treatment. It is particularly
important that all efforts are exhausted to track down
individuals who may actually be reasonable surrogates
and to ensure due diligence in learning about the patient
as a person, including identifying prior physicians,
neighbors, community social workers/case managers, and
social groups.
In this setting, it would be justified to confirm that
appropriate efforts have been made to clarify and define
the unrepresented patients best interest, particularly in
cases where there are concerns about conflict of interest
or bias. This could involve ethics committees, especially
in institutions that have well-trained, diverse, and active
committees, but this does not have to be the only mecha-
nism. Requiring steps such as additional critical care
opinions, social work, case management, or multidiscipli-
nary rounds on unrepresented patients in the ICU,
and/or discussion with a chief medical officer before
implementing a physicians decision to limit life-
sustaining treatment are all reasonable measures to
protect unrepresented patients and to ensure that physi-
cians are fulfilling their fiduciary obligations. One model
for this could be the Independent Mental Capacity Advo-
cate (IMCA) used in the United Kingdom. An IMCA is
assigned to unrepresented patients, explicitly not as a
decision-maker, but to help obtain information to ascer-
tain the patients wishes and values as well as additional
medical opinions. The IMCA prepares an advisory report
to the physician who will then decide whether it is in the
patients best interest to pursue or not pursue a specific
treatment.44
It is, however, beyond the scope of this article to
specify the best mechanism for ensuring that physicians
are appropriately fulfilling their fiduciary duties and to
describe what standards of review and evidentiary stand-
ards such a body might employ. We would only empha-
size here that decisions regarding whether continuation
or termination of life-sustaining treatment is in a patients
best interest are complex and there is a broad spectrum of
decisions that might be considered reasonable under a
given set of circumstances. The focus of any third party
involvement should not be substituting one judgment for
another, but reflecting on the whether the process by
which a physician arrived at a particular decision was
thoughtful, fair, and transparent, took into account all
relevant medical and psychosocial factors, was aided by
chaplaincy, social work or other multidisciplinary con-
sultation where appropriate, and was not motivated by
bias or conflict of interest.
44
National Care Association. Making Decisions A Guide for People
who Work in Health and Social Care. Birmingham, UK: Office of the
Public Guardian. 2009. Available at: https://www.gov.uk/government/
publications/health-and-social-care-workers-mental-capacity-act
-decisions [cited 2015 April 16].
Legitimate concerns about protecting unrepresented
critically ill patients should not lead to wholesale transfer
of responsibility for decision-making away from physi-
cians who have clear fiduciary obligations to committees
that have no such fiduciary relationship. Third party
involvement can help ensure that decision making is
transparent and that appropriate efforts have been made
to conscientiously define the unrepresented patients best
interest in the context of what can be elucidated about his
or her values and treatment preferences is appropriate.
But in the absence of a stronger claim of responsibility for
the interests of unrepresented patients, physicians should
be the default decision-makers regarding limitation or
continuation of life-sustaining treatment, with organiza-
tions such as ethics committees playing an advisory role.
CONCLUSION
Seans critical care physicians contacted the hospital
ethics committee to advise them in assessing the ongoing
burdens and benefits of mechanical ventilation and tra-
cheostomy placement. The ethics committee helped to
find several of his neighbors, who were able to add addi-
tional insight into Seans life before hospitalization.
These discussions painted a portrait of a man who was
fiercely independent and protective of his privacy, the
core values around which he appeared to have arranged
his life. The ethics committee and Seans physicians felt
that tracheostomy and a prolonged stay in the hospital or
a facility marked by progressive disability would not be
consistent with these valuates. The committee docu-
mented that it would be permissible for Sean to be taken
off the ventilator with the goal of soliciting further infor-
mation from him on treatment preferences, knowing that
he might pass away. If he had another cardiac arrest, his
physicians decided not to provide shocks or mechanical
resuscitation.
Sean survived being taken off the ventilator without
any further cardiac events. He was able to breathe on his
own and, over the next 24 hours began to interact more
easily with his team. He clearly indicated that he did not
want to go back on the ventilator or have additional
shocks. The next day, he had an unexpected cardiac
arrhythmia and passed away peacefully.
Andrew Courtwright received his MD and his PhD in philosophy from
the University of North Carolina, Chapel Hill. He completed an inter-
nal medicine residency at Massachusetts General Hospital and is cur-
rently a pulmonary and critical care fellow at Brigham and Womens
Hospital in Boston.
Emily Rubin received her JD from the University of Virginia and her
MD from Dartmouth Medical School. She completed a combined inter-
nal medicine and pediatrics residency at Massachusetts General Hospi-
tal and is currently a pulmonary and critical care fellow at the the
Hospital of the University of Pennsylvania in Philadelphia.
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