CHEST
Medical Ethics
Futility
A Concept in Evolution
Jeffrey P. Burns, MD, MPH; and Robert D. Truog, MD
The debate about how to resolve cases in which patients and families demand interventions that
clinicians regard as futile has been in evolution over the past 20 years. This debate can be divided
into three generations. The first generation was characterized by attempts to define futility in
terms of certain clinical criteria. These attempts failed because they proposed limitations to care
based on value judgments for which there is no consensus among a significant segment of society.
The second generation was a procedural approach that empowered hospitals, through their
ethics committees, to decide whether interventions demanded by families were futile. Many
hospitals adopted such policies, and some states incorporated this approach into legislation. This
approach has also failed because it gives hospitals authority to decide whether or not to accede
to demands that the clinicians regard as unreasonable, when any national consensus on what is a
“beneficial treatment” remains under intense debate. Absent such a consensus, procedural
mechanisms to resolve futility disputes inevitably confront the same insurmountable barriers as
attempts to define futility. We therefore predict emergence of a third generation, focused on
communication and negotiation at the bedside. We present a paradigm that has proven successful
in business and law. In the small number of cases in which even the best efforts at communication
and negotiation fail, we suggest that clinicians should find ways to better support each other in
providing this care, rather than seeking to override the requests of these patients and families.
(CHEST 2007; 132:1987–1993)
Key words: communication; end-of-life care; medical futility; negotaiation
Editor’s Note: The review by Burns and Truog addresses the
fifth topic in the core curriculum of the ongoing Medical
Ethics series.–Constantine A. Manthous, MD, FCCP, Section
Editors, Medical Ethics.
of medical futility emerged in the
T he1980sconcept
in response to concerns about families
who demanded life-prolonging treatments for
their loved ones that caregivers deemed to be
*From the Division of Critical Care Medicine, Department of
Anesthesia, Children’s Hospital Boston and Harvard Medical
School, Boston, MA.
The authors have no conflicts of interest to disclose.
Manuscript received June 8, 2007; revision accepted October 17,
2007.
Reproduction of this article is prohibited without written permission
from the American College of Chest Physicians (www.chestjournal.
org/misc/reprints.shtml).
Correspondence to: Robert D. Truog, MD, Children’s Hospital
Boston, MSICU Office, Bader 6, 300 Longwood Ave, Boston, MA
02115; e-mail: [email protected]
DOI:
www.chestjournal.org
inappropriate.1 While clinicians viewed efforts to
limit such treatment as anticruelty policies,2 studies of patients and families consistently indicated
that such care was frequently wanted and valued.
One survey,3 for example, found that 70% of
patients and families who had recent personal
experience with an ICU admission were willing to
undergo intensive care again even to achieve as
little as 1 additional month of survival.
Over the past 20 years, this issue has been the
focus of much debate. We suggest that the history
of this topic can usefully be divided into three
generations: the first characterized by attempts to
define futility, the second by the development of
procedural approaches to determining futility, and
the third by an emphasis on conflict resolution and
negotiation, with clinicians agreeing to accept the
choices of families in those rare cases where such
negotiation fails.
CHEST / 132 / 6 / DECEMBER, 2007
1987
The First Generation: Attempts To Define
Futility
The conceptual foundation of the first generation
of the futility debate rested on attempts to resolve
disputes by defining contexts in which therapies are
futile. In 1990, Murphy and colleagues4 proposed
seven clinical conditions in which further treatment
should not be provided, including “HIV infection
with more than two episodes of PCP pneumonia”
and “coma lasting ⬎ 48 h.”
The same year, Schneiderman and colleagues5
proposed a more refined approach:
when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of published empiric data) that in the last 100 cases
a medical treatment has been useless, they should regard
that treatment as futile. If a treatment merely preserves
permanent unconsciousness or cannot end dependence on
intensive medical care, the treatment should be considered futile.
This proposal helpfully differentiated between “qualitative” futility, which is based on a quality-of-life
judgment, and “quantitative” futility, which involves
a judgment about what probability of success is
reasonable. During the 1990s, a number of hospitals
adopted this definition into their operational policies.
A third approach to defining futility has been to
limit the concept to treatments that are “physiologically” futile.6 Using this approach, treatments are
considered futile only if they are unable to achieve
their physiologic goals (for example, mechanical
ventilation would be deemed as futile only when it
could no longer achieve blood gas values compatible
with life).
Each of these definitions is flawed. Murphy’s
approach did not account for the wide range of
outcomes possible in each of the categories. For
example, whether or not further treatment is futile
for patients who have been comatose for 48 h is
entirely dependent on the cause of the coma, and
clearly in many such cases further treatment is far
from futile. While Schneiderman’s definition clarified the differences between quantitative and qualitative futility, it did not provide any basis for assuming that chances of ⬍ 1% are not worth taking, or
that existence in a persistent vegetative state or in an
ICU is a life definitely not worth living. Indeed,
many of the better-known cases described in the
literature have hinged on precisely the current lack
of consensus in our society about such assumptions.
And although physiologic futility has sometimes
been endorsed as a “value-free” definition of futility,
this more narrow approach also depends on contro1988
versial assumptions, by prioritizing the value of
physiologic homeostasis above other values, such as
quality of life.
The celebrated case of Helga Wanglie illustrates
many of these factors. Mrs. Wanglie was an elderly
woman first admitted to Hennepin County Medical Center in Minnesota in January 1990 after
falling in her home and sustaining a hip fracture.7
Over the next 5 months in the hospital, she
suffered a series of complications, including a
cardiac arrest, that left her permanently unconscious and dependent on mechanical ventilation.
Her physicians concluded that Mrs. Wanglie could
not recover and recommended that life-sustaining
treatment was of no medical benefit and should be
discontinued. Her husband, daughter, and son
objected and demanded that all treatment be
continued. Her husband did not dispute the medical prognosis presented to him. Rather, the family’s reluctance to discontinue treatment was based
on religious and personal grounds. Mr. Wanglie
stated that only God can take life and that doctors
should not “play God.” Attempts by both the
hospital and family to find another physician or
facility in Minnesota willing to accept the patient
on transfer were unsuccessful.
As the hospital sought a resolution to the impasse, it recognized that it was unlikely to prevail
over Mr. Wanglie in court based solely on its
opinion that further treatment was futile. Rather
than argue the case on the merits of the determination of futility, the hospital chose to petition a
Minnesota Court to appoint a conservator to represent the patient and determine whether continued life-sustaining treatment was appropriate. The
judge decided in favor of the family by assigning
Wanglie’s husband, Oliver Wanglie, as her guardian, ruling the only issue before the court was
whether it was in the best interest of Mrs. Wanglie
“to have decisions about her medical care made by
her husband of 53 years or by a stranger.” Mrs.
Wanglie died of multiple organ failure a few days
after the court’s decision.
This case demonstrates the weaknesses inherent in
the definitional approach to resolving futility disputes. Even though Mrs. Wanglie arguably met both
of Schneiderman’s criteria, the hospital recognized
that criteria like these do not enjoy widespread
societal support, especially in situations in which the
patient has caring and involved family members who
disagree. The hospital was therefore unwilling to
take the case to court on the merits of a determination of futility, and instead attempted to resolve the
issue by having Mrs. Wanglie’s husband disqualified
as her decision maker, a strategy that also proved
unsuccessful.
Medical Ethics
By the late 1990s, the problems inherent to definitional approaches to futility and their failure to
resolve cases like that of Ms. Wanglie led ethicists
and clinicians to search for another paradigm for
addressing these dilemmas. This led the way to the
next generation of the futility debate.
The Second Generation: Procedures To
Resolve Futility Disputes
The second generation of the futility debate can
be viewed as attempts to develop procedures that
resolve disputes over futility. This approach was
initially described among a consortium of hospitals in
Houston,8 but rapidly gained popularity, and by 1999
was endorsed by the American Medical Association,
which stated that: “Since definitions of futile care are
value laden, universal consensus on futile care is
unlikely to be achieved. Rather, the American Medical Association Council on Ethical and Judicial
Affairs recommends a process-based approach to
futility determinations.”9
The procedural approach is now reflected in the
policies of a number of hospitals nationwide. As
hospital policies, this approach has no discrete legal
standing, and families are free to challenge these
determinations through the legal system. Children’s
Hospital Boston has a typical policy of this kind.
Table 1 lists the key elements of this policy. They
include provisions for families, as well as clinicians,
to object to care they believe to be futile. The
“bilateral” nature of the policy is important: one
retrospective study of 100 cases of allegedly futile
treatment found that families insisted on the treatments in 62% of the cases, whereas clinicians were
responsible 37% of the time.10 The policy is invoked
only when repeated efforts at consensus have failed,
and then is designed to assure that all voices have an
opportunity to be heard. If the Committee supports
the clinicians’ view that further treatments are futile,
then the hospital has four options:
1. The hospital could ask the clinicians to continue to negotiate with the family, particularly if
the review process revealed new possibilities
for building consensus.
2. The hospital could attempt to transfer the
patient to a facility willing to provide the treatments demanded by the family. The failure to
find another willing provider serves as a check
on the system to be sure that the hospital’s
position is not out of line with medical standards within the community at large.
3. The hospital could attempt to have an alternate
decision maker appointed by the court. As
illustrated by the Wanglie case (above), however, this strategy is rarely successful.
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Table 1—Futility Policy: Children’s Hospital Boston;
Key Elements
1. The Policy is ⬙bilateral,⬙ in that it addresses claims of
overtreatment by both clinicians and families.
Families can request a consult if they believe clinicians are
demanding ⬙overtreatment.⬙
Clinicians can request a consult when they believe families are
demanding ⬙overtreatment.⬙
2. There must be clear documentation of efforts to achieve
resolution with the patient and family, emphasizing that
limiting the use of life-sustaining treatments will not lead to
abandonment.
3. If repeated efforts fail, then the case is referred to the
institutional Ethics Advisory Committee for a three-phase
decisional process:
Meeting with committee and clinical team; the purpose is to
present the medical perspective on the case;
Meeting with committee and the patient or family; the purpose
is for the patient or family to ⬙tell their story⬙;
The committee meets alone; the purpose is to make a
determination of whether further use of life-sustaining
treatment is inappropriate or harmful.
4. If the committee supports the caregivers’ assessment, there are
four possible options:
Hospital administration could request the clinicians to pursue
further attempts at consensus with the patient or surrogate.
The physician and hospital could attempt to transfer care.
Hospital administration could seek a judicial resolution to the
conflict, on grounds that the patient’s surrogate is not acting
in the patient’s best interest.
Hospital administration could sanction the unilateral foregoing or
removal of life-sustaining treatments.
4. Finally, if none of these approaches are successful, the hospital could then endorse the
unilateral withdrawal of life support. The Children’s Hospital Boston policy stipulates that
such action should occur only after informing
the patient or surrogate decision maker of the
plan, and only after giving them sufficient
opportunity to seek legal advice and possibly
judicial involvement, if desired.
An important concern with the procedural approach is that it may not adequately distinguish
between futility and rationing.11 With regard to any
diagnostic or therapeutic intervention, futility asks
the question “will the intervention work?” whereas
rationing concerns the question “is the intervention
worth it?” The Society of Critical Care Medicine
attempted to clarify this distinction by noting: “treatments that are extremely unlikely to be beneficial,
are extremely costly, or are of uncertain benefit may
be considered inappropriate and hence inadvisable,
but should not be labeled futile.”12 So, for example,
mammograms for women under the age of 40 years
may not be futile in the sense that they are effective
at making the diagnosis of breast cancer. Nevertheless, one might argue that they should be rationed
CHEST / 132 / 6 / DECEMBER, 2007
1989
and their use limited to older women if the benefits
of this diagnostic test are not proportionate to its
costs. Put another way, rationing arguments must
always balance the benefits of a diagnostic or therapeutic intervention against its costs, compare the
intervention with other competing interventions, and
consider the total funds available for healthcare.
Futility arguments are fundamentally different, in
that they claim that the intervention in question is
devoid of benefit (or that the benefit is vanishingly
small). No balancing is involved. Truly futile interventions should not be offered, no matter how
inexpensive they may be.
In light of this distinction, it should be clear that
futility policies should never be invoked as a method
of cost control. While interventions that are futile
should not be provided, this is not because withholding them will save money, but because it does not
make any sense to do something that does not work.
Conversely, many interventions that are clearly not
futile should also not be provided, even though they
may clearly “work” because their benefits are not
proportionate to their costs. Failure to distinguish
between the rationale behind the concepts of futility
and rationing has been an important source of
confusion in the literature over the past 20 years.
The Procedural Approach Translated Into
State Law
Several states, including Texas, have taken the
procedural approach to the next level by adopting
this strategy into legislation. Since in these states the
judgment of the hospital’s ethics committee now has
the force of law, this legislation has become a much
more powerful tool for enforcing the views of caregivers when they believe that treatments are futile
and should not be provided. The Texas Advance
Directives Act includes most of the provisions included in the policy at Children’s Hospital Boston,
and in addition mandates a 10-day waiting period
between the decision of the ethics committee to
endorse the futility determination and the actual
withdrawal of treatment.13,14
Published evidence suggests that extensive use of
the law has been limited to relatively few hospitals in
Texas, and primarily those in urban settings.15 At
Baylor University, for example, after the law was in
place the total number of consultations for medical
futility increased by 67%, suggesting that clinicians
were more willing to seek the involvement of the
ethics committee when there was a clear potential
for legal resolution of the clinical impasse.13 In
addition, in most cases (43 of 47 cases), the committee agreed with the clinicians that further treatment
1990
was futile. In only six cases did the family initially
refuse to accept the conclusion of the ethics committee. In three of these cases, the family agreed to
withdraw life support within a few days of the
committee’s report, in two cases the patient died
during the 10-day waiting period, and in one case the
patient died while awaiting transfer to an alternate
care provider. In this series of patients, there were
no instances where the decision of the ethics committee was challenged in court.
Translation of the procedural approach into law
has exposed some challenging problems, however.16
Some of these were revealed in the recent case of
Emilio Gonzales. Emilio was a 17-month-old child
with Leigh disease, a rare inherited neurometabolic
disorder characterized by degeneration of the CNS
that is rapidly progressive after onset.17 He was deaf,
blind, and ventilator dependent. His mother, Catarina Gonzales, 23 years old, acknowledged that her
child was terminally ill, but wanted him to receive a
tracheostomy and gastrostomy tube and to be placed
in a long-term care facility: “I just want to spend time
with my son. . . I want to let him die naturally
without someone coming up and saying we’re going
to cut off on a certain day.”
Clinicians at the Children’s Hospital of Austin
disagreed, claiming that further life-prolonging efforts were futile, and invoked the Texas Advance
Directives Act. In addition to observing the 10-day
waiting period, the hospital contacted 31 facilities
“without any single indication of interest in taking
the transfer.” Nevertheless, the judge granted several extensions to the 10-day waiting period in the
hopes of eventually finding an institution willing to
provide continued life support. As the child’s lawyer
observed, “The benefit of treatment for this child is
continued life. . . Yes, he will never be a normal little
boy, but there are plenty of people out there who are
not normal but continue life and enjoy it to the level
they are capable of.” Emilio Gonzales died of natural
causes in late May 2007, prior to the end of the
extension to the waiting period granted by the
court.18
While procedural approaches to resolving futility
disputes in health care are laudable for avoiding
some of the deficiencies associated with the definitional approach, they are still problematic, particularly in their legislative form. Perhaps the biggest
concern is that they put authority for resolving the
disagreement between the family and the caregivers
in the hands of the hospital ethics committee. This is
a practical approach because ethics committees are
readily available and knowledgeable about the issues
at stake. The membership of these committees,
however, is clearly not representative of the community that the hospital serves. Indeed, most commitMedical Ethics
tees are composed primarily of doctors, nurses, and
other hospital employees. Most do include some
community representatives, but even these are often
grateful former patients of the hospital. In other
words, the delicate task of adjudicating the conflict
between the values of the family and the clinicians is
done by a group that is virtually indistinguishable
from the clinicians themselves.19
While this is a problem for procedural approaches
in general, there is a critically important difference
between procedural approaches as they are used in
hospital policy vs how they are used in state law.
Under hospital policy, the patient and family can
challenge the determination of the committee in
court. While the process is often cumbersome, one
purpose of the courts is to protect the rights of
minorities against the “tyranny of the majority.”
Under the Texas Advance Directive Act, however,
no such recourse is available. Under that law, families may ask a judge to grant them an extension to the
10-day waiting period, but the judge has no authority
to question or to overturn the decision of the hospital
ethics committee. In our view, the Texas law therefore gives an unwarranted amount of power to the
clinicians and hospitals over patients and families
who hold unpopular beliefs or values.
The Third Generation: Better
Communication and Negotiation
In our experience, ethics consults on “futility” cases
are far more commonly about breakdowns in communication and trust and far less often intractable disputes
over the value assigned to medical facts. Up to this time
in the futility movement, however, there has been less
focus on interventions intended to mitigate conflicts as
they arise but before they become intractable.
Decisions around life-sustaining treatments require excellent communication, yet repeated findings in the literature reveal that physicians’ communications skills in this context are suboptimal and
thus enhance the chances for conflict.20,21 Several
factors leading to poor communication in this context
have been noted. First, the complex medical aspects
of a patient with a critical illness must be integrated
with considerations of the patient’s values and preferences, but this requires communication skills that
are far more sophisticated than those taught in
medical school around the basic medical interview.22
Second, because most critically ill patients are unable to participate in end-of-life treatment decisions,
family members must become involved in decision
making. Yet, the data indicate that physicians and
family members often have difficulty communicating
effectively precisely in the context where it is needed
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most. For example, one study23 of 656 patients with
prolonged stay in seven ICUs found that disagreements over life-sustaining treatments were the major
source of conflict in one-third of all cases. Another
study24 audiotaped 51 physician-family conferences
in which there were deliberations about major endof-life treatment decisions at four hospitals and
found that physicians did not discuss the patient’s
prognosis for survival in more than one third of
conferences and that less-educated families received
even less information about prognosis.
Compounding these communication problems between physicians and the patient’s surrogates are
media portrayals of unrealistic outcomes from medical interventions, likely giving family members a
preconceived view that is overly optimistic in many
contexts. For example, one observational study25 of
60 occurrences of cardiopulmonary resuscitation in
97 television episodes found survival rates significantly higher than the most optimistic survival rates
actually reported in the medical literature. With such
unrealistic outcomes engrained in the public media,
it is understandable that many patients and their
families approach these issues with a different frame
of reference, thus laying the foundation for disagreements over the utility of treatment plans.
Over the past few decades, in business and the law,
techniques to enhance communication and negotiation
have gained increased use specifically to circumvent
disagreements in highly charged situations. Unlike interventions on medical futility that focus on how to
proceed after deep disagreements have already solidified, the business and legal profession have rigorously
studied conflict resolution and devised an increasing
array of techniques to mitigate it.
Among the many approaches to a successful negotiation, one of the more frequently cited is the “principled negotiation” approach.26 This approach rests of
four essential conditions: separate the people from the
problem; focus on interests rather than positions; generate a variety of options before settling on an agreement; and insist that the agreement be based on
objective criteria. As seen in Table 2, adapting this
framework to emerging conflicts between patients or
their surrogates and clinicians may provide a useful
guide to channel actions toward common interests and
away from personalities and emotion, limit miscommunication, and thus mitigate the frequency and intensity
of conflicts over the value of treatments.
As important as it is to enhance clinician’s skills at
communication and negotiation, that fact remains
that even impeccable efforts at negotiation may
sometimes fail. What should clinicians do when the
conflict is truly intractable? First, they should ask if
the patient is being harmed by continuation of the
contested interventions. If so, then they should ask
CHEST / 132 / 6 / DECEMBER, 2007
1991
Table 2—Incorporating Successful Mediation
Techniques From the Business and Legal Professions
Into Medical Decision Making: the Principled
Negotiation Approach*
Separate the people from the problem
Issue: too many clinicians are updating the patient or patient’s
appropriate surrogate, leading to confusion and distrust.
Approach: identify a few clinicians with an effective relationship
with the family and assign them as the principle spokespersons
for clinical updates and discussions over treatment options, and
consider social work and/or ethics consult for additional support
and perspectives.
Issue: family anger over the patient’s outcome has led to a
breakdown in communication and trust with the clinical team.
Approach: shift the emphasis from a focus on the emotional
response to a focus on resolving remaining problems. Allow the
family time for an emotional response, offer to bring in
consultants for a second opinion, seek common ground by
focusing on problems and not personalities, exchange relevant
medical information and information about the patient’s values,
and check for understanding of information.
Focus on interests rather than positions
Issue: there is a team/family dispute over the DNR status of a
patient. Approach: explore all of the deep-seated concerns of the
family, assure the family and team that DNR status will not lead
to diminished attention to symptom relief. Seek common ground
on a modified DNR order that addresses more likely scenarios,
as opposed to unnecessarily generating conflict by seeking a full
DNR order that fosters conflict over scenarios that are far less
likely. For example, seeking to withhold further escalation of
therapy may be more appropriate and less threatening and
contentious than seeking to withhold chest compressions for
cardiac arrest for a patient on mechanical ventilation with severe
traumatic brain injury.
Issue: family refuses transfer of the patient to the ward from the
ICU. Approach: explore the family concerns and devise
acceptable alternatives such as short-term enhanced nursing to
patient ratio on the ward, or physician continuity strategies that
relieve concerns for abandonment in the transfer process.
Generate a variety of options before settling on an agreement
Issue: what treatment options will be presented to the family?
Approach: instead of the attending or primary team generating
and then presenting the family with treatment options that may
appear limiting or contentious to the family, first establish trust
through open process with the family. Explore possible
treatment options with consultants and others before settling on
recommendations, discuss preferred roles in decision making,
and seek consensus about the treatment course most consistent
with the patient’s values and preferences.
Insist that the agreement be based on objective criteria
Issue: there is a team/family dispute about ongoing lifesustaining treatments. Approach: before major procedures, and
following development of significant clinical change, seek family
meetings where timelines for trials of therapy, and the rationale
for the timeline, are clearly presented to the family.
actually harmful to the patients involved. The evidence shows that cases like these are rare (and with
good communication and negotiation should be even
more rare), and their financial impact on healthcare
resources is correspondingly small.27,28 The biggest
challenge they pose is to the morale of health-care
workers, who find it stressful to continue to care for
patients well beyond the point at which they think
the patients may benefit from the care.29
In these rare situations, we think that clinicians need
to focus more on finding ways to support each other in
the challenging task of honoring the wishes of family
members even when they are strongly in disagreement
with them. Until now, most of the effort has been
focused on ways to override the requests of family
members, but the history of the futility debate shows
that this approach comes at a great cost in terms of our
commitment to respecting the rights of minorities with
unpopular views. The best solution – although perhaps
also the most difficult – is to turn our efforts toward
tolerating the demands for care that we believe to be
futile, and finding ways to better support the emotional
needs of each other in those rare cases where we are
called on to provide this care.
Next Steps
Neither the first generation of the futility movement,
grounded in attempts to define the concept, nor the
second generation of the futility movement, based on
attempts to develop institutional and legislative procedures to adjudicate conflicts, have succeeded in resolving the debate about medical futility. The medical
profession needs to evolve new strategies to resolving
questions of futility. New strategies can only follow a
more nuanced view of the underpinnings of conflicts
over medical decision making. The essential features of
futility disputes, and thus our approach to resolving
these conflicts, can be viewed as an inverted pyramid
(Fig 1). The great majority of these conflicts are more
*Adapted from Fisher et al.13 DNR ⫽ do not resuscitate.
the courts to appoint a new surrogate for decision
making. Surrogates should never be allowed to make
decisions that are harmful to patients.
But in many cases, such as those of Helga Wanglie
and Emilio Gonzales, it may be difficult to establish
that the surrogates are making choices that are
1992
Figure 1. Pyramid approach to resolving futility disputes.
Medical Ethics
fundamentally anchored in communication breakdown, and therefore the first, and most effective,
intervention will be strategies that enhance effective
communication. Once effective communication is in
place, a useful framework is to employ the four steps to
a principled negotiation. Only a very small percentage
of disagreements remain beyond the persistent efforts
of clinicians and patients (or their appropriate surrogates) to find common ground. For the small number
of intractable disputes that remain, we argue that our
efforts should be directed more at finding better ways
to support the patient’s family and each other in
providing that care than in seeking to overrule the
requests for care that we regard as unreasonable.
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