2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

an external observer, but to the person hoping for a miracle,
it is true in all respects and “realistically possible.” 4
A common understanding of false hope is a patient who
mis-states the probability of a goal and hence harbors “false”
hopes. It is common for patients to misunderstand statistics.
This process is better labelled as denial or on occasions as a
delusion. It is not uncommon for oncologists to be a little
vague and ambiguous in communicating prognosis and statistics
in order to encourage hope, as Boris taught us. 9
Furthermore since hope exists in the unknowable future it
cannot be disproven and therefore it cannot be shown to be
false. For hope to function, it does not matter whether the
statistics are true or false, or whether the patient misconstrued
them. All that it matters is for the patient to believe
them. Hope will then thrive, for better or for worse.
Denial as an Elixir of Hope
Daneault observed that “false hope, when it denies the
reality of imminent death, may lead to a neglect of final
arrangements and added burden for families,” while Von
Roenn categorically stated that “false hope leads to disappointment
and disillusionment.” 7,15 It might be more pragmatic
to approach such hoping as we would denial and not
to judge whether hope is “false” or “true.” If denial is not
causing harm and is functioning as a psychological defense,
then there is no need to intervene. Some people hope until
the very end and thereby preserve their emotional wellbeing.
Others, by hoping against hope, create problems—
“evil” as the Greeks would have it—that cause harm or
damage. It would be appropriate to consider counseling this
latter group, similar to those where denial is causing problems.
Denial is the gap between a subjective and objective
assessment of a medical situation. Into this gap the patient
can develop new goals and by reducing anxiety, can improve
motivation. Clayton et al performed a systematic review of
hope in terminally ill patients and showed that some patients
and caregivers “found hope in avoiding the facts, that
is, denial. 16 The practical question to ask is: is hope functioning
in a beneficial or maladaptive way?
Life Without Hope
Boris observed, “Indeed, there is no torment quite like
hopelessness. But hopelessness marks the presence of
thwarted hope, not hope’s absence.” This fine distinction
points the way to a therapeutic paradigm. A hope that has
failed (i.e., hopelessness) causes frustration and pain. However,
if one does not hope for anything, then one will not
experience the anguish of frustrated hope. Not engaging in
hoping means one cannot lose or, indeed, benefit from hope.
Fear is also an expectation of the future. Fear in contrast
to hope creates negative feelings and anxiety. It is in some
ways an opposite to hope. If one were to disregard the future
and just live in the here and now, then there would be no
hope or fear as Gravlee observed, “The one with no hope also
does not fear. Fear about the uncertain future remains, so
long as hope about the future remains.” 17 We are anxious
that our hope—our gamble in the future—will fail. Huxley
said the same thing, though used drugs (“soma”) to stop
worrying about what might happen: “Was and will make me
ill, I can take a gramme and only am.” 18 Without memories
there will be no anxiety about something going wrong in
e22
SIMON WEIN
the future. Without a future there will be no hope or fear
that the hope might fail. This fear-hope dyad is reflected in
the ancient Greek’s jaundiced view of hope. By not hoping
(clearly in some cases this is a form of denial), there will no
longer be the merry-go-round of hope and despair.
Hope in Oncology
In applying hope to clinical oncology a number of scenarios
arise:
• Should we give antitumor treatments to boost hope?
How ethically bound are we to prescribe chemotherapy
because a patient hopes it will work?
• How prepared are we to say “no” to further treatment at
the risk of the patient going elsewhere?
• Is there a role for placebo to maintain hope?
• Does telling the truth diminish hope?
• Does loss of hope shorten life?
• How do oncologists stop their own hopes (and fears) from
influencing the decision?
Three common strategies can be used when hope has
failed in advanced cancer: to live today, to exchange one
hope for another, and to reflect about the life lived. It is
sometimes useful to discuss the nature of hope with the
patient and how it influences decision making, especially if
hope is driving the patient to unrealistic decisions or is
causing psychologic symptoms of distress. A common approach
is to suggest to the patient to live day to day and to
enjoy the moment. Leave tomorrow to the future. Of course
what we are doing is replacing the future (hope and fear)
with the present. If the process of hoping cannot be relinquished—if
the perceived subjective good is too comforting to
give up—yet is starting to cause harm then Snyder’s hope
model allows lost goals to be mourned and replaced with new
ones. Instead of hoping for a cure, the goal might be switched
to hoping to see a daughter married. Thus hoping in the
future comforts the living in the present and pushes acceptance
aside.
Finally, a simple and effective strategy, “the life narrative,”
is to talk to the patient about their lives and loves. This
starts the process of replacing hope (in the future) with
acceptance (in the present). Roy valued the physician “who
know(s) how to drop the professional role mask and relate to
others simply and richly as a human being.” 19
Conclusion
Our professional duty demands not only an adherence to
the AMA ethical guidelines but also an effort to be aware of
the psychologic processes involved in decision making—both
the patients’ and ours. Denial, avoidance, and hope are
psychologic mechanisms used to avoid conflict. Hope has two
core characteristics: it is a thought process that can exist
only in the future and it is “hardwired” to make us feel good.
Hope is neither inherently good nor bad. The outcome of
hope is neither necessarily good nor bad.
“False hope” does not exist in the sense that each time we
hope, we do so subjectively for our own psychologic benefit. If
an external observer dismisses the likelihood of my hope
materializing, this does not make my hope any less realistic
or significant for me. Nor does it matter if the patient
him/herself “misunderstands” the prognosis and build their
hopes on a false premise. This is a form of denial and if it
helps the patient overcome the stress of the illness without
causing harm, then it is not “false” hope.