COMMUNICATING PROGNOSIS IN THE ERA OF EXCEPTIONAL RESPONDERS

“How Much Time Do I Have?”: Communica ng Prognosis in

the Era of Excep onal Responders
Thomas W. LeBlanc, MD, MA, MHS, FAAHPM, Jennifer S. Temel, MD, and Paul R. Hel , MD

OVERVIEW
Prognos ca on is the science by which clinicians es mate a pa ent’s expected outcome. A robust literature shows that
many pa ents with advanced cancer have inaccurate percep ons of their prognosis, thus raising ques ons about whether
pa ents are truly making informed decisions. Clinicians’ ability to communicate prognos c informa on is further compli-
cated today by the availability of novel, efficacious immunotherapies and genome-guided treatments. Currently, clinicians
lack tools to predict which pa ents with advanced disease will achieve an excep onal response to these new therapies.
This increased prognos c uncertainty on the part of clinicians further complicates prognos c communica on with pa ents.
Evidence also suggests that many oncologists avoid or rarely engage in prognosis-related communica on and/or lack skills
in this area. Although communica on skills training interven ons can have a posi ve impact on complex communica on
skills for some clinicians, there is no one-size-fits-all approach to improving pa ent-clinician communica on about progno-
sis. Yet improving pa ent understanding of prognosis is cri cal, because pa ent understanding of prognosis is linked with
end-of-life care outcomes. Solu ons to this problem will likely require a combina on of interven ons beyond communica-
on skills training programs, including enhanced use of other cancer clinicians, such as oncology nurses and social workers,
increased use of pallia ve care specialists, and organiza onal support to facilitate advance care planning.

P rognos ca on is the science by which clinicians es -

mate the expected outcome for a par cular pa ent, in
a par cular clinical scenario. In some cases, prognos ca on
refers to clinicians’ es ma on of the overall possibility of
cure, wherein the prognos c es mate is binary (as in, “yes,
cure is possible,” or “no, it is not”). In other cases, prognos-
ca on involves the clinician es ma ng the likelihood of
cancer recurrence a er receiving poten ally cura ve ther-
apy, such as surgery, or the chance of survival 5 years a er
cancer diagnoses. Whichever way the clinician formulates
prognosis, by rendering one, the clinician aims to convey
cri cally important informa on to pa ents and their family
about what the future holds. Although the bioethical prin-
ciple of autonomy suggests that knowing one’s prognosis is
essen al (as in, “I have a right to know”), prognos ca on
is also instrumental in the decision-making process about
cancer treatments. Indeed, prognos c informa on must be
shared and understood as one essen al part of the process
of “shared decision-making,” a topic of growing importance
in modern cancer care.
WHY IS PROGNOSTICATION IMPORTANT?
Shared decision-making is defined as the process by which
“clinicians and pa ents share the best available evidence
when faced with the task of making decisions, and where
pa ents are supported to consider op ons, to achieve
informed preferences.”1 For more than a decade, the Na-
tional Academy of Medicine has recommended shared
decision-making as the gold-standard process by which med-
ical decision-making should occur2; others uphold shared
decision-making as the pinnacle of person-centered care.3
Essen al components of shared decision-making include:
(1) discussion of the choice at hand, (2) a detailed review of
poten al risks, benefits, and tradeoffs for each treatment
op on, and (3) the solicita on and discussion of individual
values, goals, and preferences important to that par cular
pa ent.
Regardless of the decisional framework used, understand-
ing one’s prognosis is fundamental to making an informed
treatment decision. Imagine, for example, a patient with
acute myeloid leukemia who is facing a choice about whether
to pursue high-dose induction chemotherapy, low-dose
chemotherapy, or suppor ve care alone. The possibility of
achieving a complete remission might be as high as 50%
to 85% with high-dose chemotherapy, and this treatment
might also confer a long-term chance of cure, yet this treat-
ment also inherently involves some risk of early death. On
the other hand, remission and cure are far less likely with

From the Cancer Pa ent Experience Research Program, Duke Cancer Ins tute, Division of Hematologic Malignancies and Cellular Therapy, Duke University School of Medicine,
Durham, NC; Massachuse s General Hospital, Boston, MA; Department of Medicine, Division of Hematology/Oncology, Indiana University Melvin and Bren Simon Cancer Center,
Indiana University School of Medicine, Indianapolis, IN.

Disclosures of poten al conflicts of interest provided by the author are available with the online ar cle at asco.org/edbook.

Corresponding author: Thomas W. LeBlanc, MD, MA, MHS, FAAHPM, Box 2715, DUMC, Durham, NC 27710; email: thomas.leblanc@duke.edu.

© 2018 American Society of Clinical Oncology

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LEBLANC, TEMEL, AND HELFT
low-dose chemotherapy, and they are not possible with
suppor ve care alone. Although low-dose treatment poses
very li le to no risk of early death from toxicity, this reduc-
on in risk comes at great cost if one priori zes a chance at
cure or highly values prolonged survival.
How a pa ent approaches these important tradeoffs is
influenced by their understanding about the possible (and
most likely) outcomes. For example, if a pa ent does not
understand that their disease is poten ally curable, that
pa ent may make fundamentally different decisions about
the tradeoffs inherent in receiving chemotherapy, par cu-
larly regarding side effects and risks. On the other hand, a
pa ent who understands that their disease is incurable may
priori ze these factors differently, perhaps favoring less-
aggressive interven ons in an effort to priori ze overall quality
of life and symptom control, with less emphasis on prolong-
ing life. A growing evidence base supports the connec on
between pa ent understanding of prognosis and treatment
preferences, as we discuss further below.
HOW WELL DO PATIENTS WITH CANCER
UNDERSTAND THEIR ILLNESS?
Several studies suggest that pa ents with advanced solid
tumors and hematologic cancers alike harbor inaccurate
percep ons of their prognosis.4 In a study of nearly 1,200
pa ents who received chemotherapy for metasta c lung
or colorectal cancer, inves gators used surveys to assess
pa ents’ understanding of the intent of their chemotherapy.
In this study, 69% of those with lung cancer and 81% of
those with colorectal cancer did not understand that their
chemotherapy was unlikely to yield a cure, and that it was
largely being prescribed with pallia ve intent.5 Similarly, an
interna onal study showed that 55% of 1,390 pa ents with
cancer who were receiving pallia ve care inaccurately re-
ported their cancer as being curable.6 In a study of 50 pa-
ents with advanced gastrointes nal cancers, inves gators
assessed pa ents’ informa on preferences, understanding
PRACTICAL APPLICATIONS
• Ensuring that pa ents have an accurate understanding of
their prognosis is necessary to ensure informed decision-
making in cancer care.
• Evidence shows that many people with advanced cancer
report an inaccurate percep on of their prognosis.
• Pa ents’ prognos c understanding has a great impact
on their treatment choices, par cularly regarding care at
the end of life.
• Novel immunotherapies and genome-targeted
treatments, which yield excep onal responses in a
small propor on of pa ents, are further complica ng
oncologists’ ability to formulate and communicate
prognoses to pa ents with advanced disease.
• Exis ng approaches to improving pa ent-clinician
communica on in oncology are inadequate to
accommodate different levels of skill and ap tude
among prac cing oncologists.
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of prognosis and treatment goals, and overall quality of life
and mood.7 Although most pa ents (75%) wanted to know
as much as possible about their cancer, 50% thought the
goal of their pallia ve treatment was to “cure the cancer.”
In a study of 43 pa ents age 60 or older with acute my-
eloid leukemia or high-risk myelodysplas c syndrome, inves-
gators assessed prognos c understanding and treatment
preferences about intensive or nonintensive approaches.8
Ul mately, 74% of pa ents es mated their chance of cure
at 50% or greater, whereas 89% of the me their physicians
es mated it at 10% or less. Most pa ents (63%) also reported
not being offered other treatment options, despite evi-
dence of such conversa ons being universally documented
in the clinical record. Similarly, in a prospec ve na onal co-
hort study of pa ents undergoing stem cell transplanta on,
inves gators found that although pa ents and physicians
were both relatively accurate at predicting mortality in
low-risk scenarios, there were marked discrepancies in
intermediate- or high-risk scenarios. In these cases, pa-
ents tended to be overly op mis c and harbored similar
expecta ons to the lower-risk scenarios, whereas their phy-
sicians were more appropriately guarded about the likely
outcome.9 Evidence also suggests, however, that most pa-
ents are unaware that their expecta ons about prognosis
o en vary from that of their oncologists.10
HOW DOES PROGNOSTIC UNDERSTANDING
IMPACT DECISION MAKING?
Pa ents’ prognos c understanding plays an important role
in their medical decision-making. Pa ents who overes -
mate their likelihood of survival or cure are also more likely
to pursue aggressive interven ons at the end of life.11,12 Other
evidence suggests that pa ents’ understanding of progno-
sis is associated with their willingness to undergo chemo-
therapy. For example, in a study of 56 pa ents with lung or
prostate cancer compared with a control group consis ng of
20 clinic nurses and radia on technologists, inves gators
used interviews to explore the associa on between treat-
ment toxici es, associated outcome improvements, and will-
ingness to undergo treatment. There was much variability
in willingness to undergo difficult treatments to prolong
survival, with pa ents being much more willing to do so than
clinic staff. In addi on, there was a clear rela onship be-
tween expected outcome improvements and willingness to
tolerate difficult side effects.13
Another study used a hypothe cal treatment scenario to
demonstrate this rela onship. Inves gators asked 73 pa-
ents with lung cancer and 120 pa ents without cancer to
rate their willingness to undergo various intensi es of treat-
ment. Pa ents were also asked to state the minimum bene-
fit that would make a treatment acceptable. When cure was
offered as a possibility, many more respondents expressed
willingness to undergo treatment.14 Similarly, evidence from
an interview study suggests that many pa ents with a history
of lung cancer did not actually receive the treatment they
would have chosen had they fully understood their progno-
sis and the benefits and risks conferred by pallia ve-intent

chemotherapies.15 Other evidence shows that pa ents who
report a more accurate understanding of their prognosis are
less likely to receive aggressive therapies at the end of life.16
This brief review of published evidence highlights the
need for improvements in pa ents’ overall understanding
of their illness, and it suggests that informed decision-making
may not actually be occurring frequently. One approach to
this problem is for clinicians to discuss prognosis more of-
ten and openly. Indeed, evidence suggests that many oncol-
ogists simply do not communicate a prognosis, or instead
provide an op mis c prognos c es mate to their pa ents.17
Although some clinicians report concern that a more accu-
rate disclosure may be upse ng to pa ents with a poor
prognosis, evidence suggests that even those who are upset
by learning about their poor prognosis are no less likely to
want to know this informa on.18 Other evidence demon-
strates that when clinicians disclose a prognosis, their pa-
ents are more likely to have an accurate understanding of
their life expectancy, with no harm to the pa ents’ emo onal
well-being or the pa ent-doctor rela onship.19 However, ev-
idence is mixed regarding the impact of honest prognos c
disclosure on pa ents’ percep on of their oncologist; one
study links inaccurate pa ent understanding of progno-
sis with be er pa ent ra ngs of clinician communica on,5
however, another shows no relationship between prog-
nos c discussion and pa ents’ percep ons of the pa ent-
physician rela onship.20 Further research is needed in this
area, as a recent analysis points to a slight decrement in
pa ents’ quality of life and mood among those who fully
understand their illness. This effect appears to be buffered
among pa ents who adopt ac ve coping strategies.21 Regard-
less, these concerns are not sufficient jus fica on for with-
holding prognos c informa on from pa ents and families.
In the sec ons that follow, we review and discuss emerg-
ing issues in prognosis-related communication, including
those related to the growing prognos c uncertainty associ-
ated with novel therapies and the minority of pa ents who
will achieve an excep onal response to these treatments.
Therea er, we highlight evidence that oncologist-specific
factors may contribute to pa ents’ inaccurate prognos c
understanding and thus receipt of overly intensive treat-
ments at the end of life, and suggest poten al approaches
to improve pa ent-clinician communica on.
EXCEPTIONAL RESPONDERS, HOPE, AND
PROGNOSTICATION: MAKING A TOUGH
PROBLEM EVEN TOUGHER
The availability of novel, efficacious treatments is chang-
ing the landscape of cancer therapeu cs and drama cally
improving prognosis in a subset of pa ents with advanced
disease. As oncologists, it is gra fying and exci ng to ad-
minister therapies such as immune checkpoint inhibitors to
pa ents who previously had a prognosis of less than 1 year,
and occasionally to see their cancer remain quiescent for
many years.22 Although it is exci ng to read manuscripts de-
scribing prolonged responses and the tail-at-the-end-of-the
curve with immune checkpoint inhibitors, this excitement
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COMMUNICATING PROGNOSIS IN THE ERA OF EXCEPTIONAL RESPONDERS
pales in comparison with the experience of actually witness-
ing these incredible outcomes when they occur.
A recent case highlights the immense sa sfac on and re-
markable outcomes some mes associated with these novel
therapies. Karen is a 46-year-old woman with metasta c
non–small cell lung cancer whose health was deteriora ng
rapidly a er failure of mul ple lines of chemotherapy. We
started preparing her to communicate her death with her
7-year-old son when, a er months of wai ng for insurance
approval, we were able to administer nivolumab. Karen had
a rapid and complete response, with resolu on of her cancer-
related symptoms and no immune-related side effects. She
is alive and well, and off cancer-directed therapy 3 years
later. It is truly exhilara ng to witness the sudden improve-
ment of a young person who is dying, with high quality years
added to life that simply would not have been a ained prior
to the availability of this therapy.
Although this case illustrates an excep onal responder,
unfortunately, many pa ents do not respond to immune
checkpoint inhibitors, or have underlying health condi ons,
or experience toxici es that prohibit administra on of im-
mune checkpoint inhibitors. Thus, although oncologists who
witness cases like Karen’s appropriately feel quite hopeful
about the role these therapies can play for pa ents with
advanced cancer, we must balance this op mism with the
reality that most pa ents will not be so excep onal. As on-
cologists, we have always been responsible for communi-
ca ng difficult informa on to pa ents about their illness,
prognosis, and the possible outcomes with therapy. However,
the availability of novel therapies and the percep on of a
more uncertain prognosis that they may create, is making
the difficult task of discussing prognosis with pa ents even
more challenging.
There are several reasons why the availability of these
novel therapies is making the already tough problem of com-
munica ng prognosis more complex. In the case of immune
checkpoint inhibitors, there is s ll a great deal of uncer-
tainty about who will respond to and, indeed, who should
receive these agents. In contrast to the use of targeted ther-
apy in pa ents with defined gene c muta ons, such as the
use of first-line alec nib in pa ents with ALK transloca ons
in which the response rate is over 80%, response to immune
checkpoint inhibitors is much more unpredictable, even in
pa ents who express the PD-L1 biomarker.23,24 For example,
in the randomized trial that led to the U.S. Food and Drug
Administra on (FDA) approval of first-line pembrolizumab
for patients with metastatic non–small cell lung cancer,
only 30% of poten ally eligible pa ents had sufficient PD-
L1 expression to qualify for the study.25 Even in this popula-
on, less than half of the par cipants achieved a response
to pembrolizumab.25 Although be er described in pa ents
with melanoma, a subset of patients who do respond to
immune checkpoint inhibitors experience prolonged re-
sponses, leading to much discussion about the tails on the
survival curves and the possibility of cure.22,26 Though these
therapies can be effec ve in pa ents with low or no PD-L1
expression, the majority of pa ents who do not express this
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LEBLANC, TEMEL, AND HELFT
biomarker will not respond to immune checkpoint inhibi-
tors, although this varies depending on the tumor type.27,28
Thus, although pa ents may have a cancer type that is el-
igible to be treated with an immune checkpoint inhibitors
(if FDA-approved), it remains unclear which pa ents will
respond, and, of those who do respond, it remains unclear
which responses will be excep onal.
There is also a lack of consensus about which pa ents with
comorbid disease are eligible to receive immune checkpoint
inhibitors. The toxici es associated with checkpoint inhibi-
tors lead to substan al concerns about administering these
treatments to pa ents, especially to those with underlying
autoimmune diseases. Data demonstrate that autoimmune
diseases, such as rheumatoid arthri s, may be exacerbated
during therapy with checkpoint inhibitors.29 Yet, no clear
recommenda ons exist regarding which pa ents with au-
toimmune diseases are at risk, or the degree of severity
which contraindicates these treatments. Our anecdotal
experience is that great varia on exists among clinicians in
their comfort and willingness to administer immune check-
point inhibitors to pa ents with underlying autoimmune
disease. In addi on to comorbid disease, there are few
available data to guide clinicians on administering therapies
in pa ents with poor func onal and performance status.30
Although oncologists generally modify their treatment of
older pa ents with marked comorbid disease and refrain
from administering chemotherapy to pa ents with a poor
performance status, ques ons remain about whether they
should administer checkpoint inhibitors to very elderly or ill
pa ents. A recent medical record review of pa ents treated
with PD-1 inhibitors demonstrated low response rates and
survival in pa ents with a poor performance status.31 This
uncertainty about which pa ents are truly good candidates
for immune checkpoint inhibitors further complicates com-
munica on about these treatments with pa ents and their
families.
Another challenging situa on that occurs more commonly
with immune checkpoint inhibitors is when exceptional
responders experience toxici es that limit further admin-
istra on.32,33 A recent case highlights the difficulty of this
scenario. John was an 82-year-old man whose wife had re-
cently died from pancrea c cancer when he was diagnosed
with metasta c non–small cell lung cancer. His percep on
of chemotherapy was quite nega ve based upon his wife’s
experience, so he was elated when his PD-L1 tes ng came
back at 80%. A er two cycles of pembrolizumab, his cancer
shrank by approximately 75%, and he experienced marked
clinical benefit. Unfortunately, when he arrived in clinic for
his planned third cycle of treatment, he had grade 4 eleva-
ons in his transaminases. His transaminases improved with
prolonged high-dose steroids, and, 5 months a er receiving
his last dose of pembrolizumab, his cancer remains stable
without growth. Although data suggest that he may have a
prolonged response despite discon nuing pembrolizumab
a er only two cycles, he has experienced a great deal of dis-
tress about his treatment plan a er his cancer grows in the
future.33 Oncologists occasionally must discon nue targeted
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therapy or chemotherapy because of toxicity in pa ents
who are having excellent responses, however, this may be a
more frequent occurrence with immune checkpoint inhibi-
tors. Thus, oncologists may more o en be in the posi on of
suppor ng pa ents who must discon nue an effec ve and
life-prolonging therapy because of toxicity.
This greater uncertainty about who will respond to im-
mune checkpoint inhibitors and for how long, as well as
which pa ents can safely receive treatment, makes com-
munica ng with pa ents and their families about prognosis
even more difficult and complex. In contrast to alec nib,
which is known to work quite well in most pa ent with met-
asta c non–small cell lung cancer harboring an ALK translo-
ca on, or dacarbazine, which is known to work quite poorly
in most pa ents with metasta c melanoma, at this me we
do not have reliable means to predict who will respond to
immune checkpoint inhibitors and how well they will work
in a given pa ent.34 Physicians are most comfortable when
they can provide guidance to pa ents based upon accurate
es mates of benefit and risk. The struggle to communicate
effec vely with pa ents and their families is magnified by
greater degrees of uncertainty when they must interject
the conversa ons with frequent qualifica ons of “maybe”
or “possibly.”35,36 Importantly, the strategies that we must
use to communicate with pa ents and families about the
risks, benefits, and possible outcomes of treatment have
not changed. These techniques are well outlined in a recent
ASCO consensus guideline on pa ent-clinician communica-
on, and include techniques like “mixed framing,” such as
best/worse/most likely outcome.37-39 However, it is essen al
that oncologists do not simply remember and refer to the
excep onal responders, like Karen, when engaging in con-
versa ons with their pa ents about prognosis with immune
checkpoint inhibitors, and instead express hope balanced
with all of the possible outcomes of treatment. In the next
sec on, we discuss oncologists’ communica on of progno-
sis in greater detail, including poten al approaches to im-
proving pa ents’ prognos c understanding to enable them
to make goal-concordant decisions about their cancer and
end of life care.
PROGNOSIS RELATED COMMUNICATION
WITH PATIENTS WITH ADVANCED CANCER
Evidence shows that a substan al propor on of the nearly
600,000 pa ents who die of cancer each year in the United
States experience inadequate or low-quality communica on
from clinicians. Such poor-quality pa ent-clinician communi-
ca on contributes to lower-quality end-of-life experiences,
including late receipt of chemotherapy, late referral to hos-
pice, and a lower likelihood of dying at home, the preferred
place of death for most Americans. ASCO and the Na onal
Quality Forum both advocate for less-intensive medical inter-
ven ons in the last month of life for pa ents with cancer.40-42
Despite these recommenda ons, care intensity remains high
at the end of life for many pa ents with advanced cancer43
and, in the last 4 weeks of life, health care use and associated
expenses o en rise.44,45

Although the underlying causes of over-treatment of pa-
ents with cancer at the end of life are both complex and
mul farious, we contend that the principal modifiable factor is
the quality of pa ent-clinician communica on experienced
by pa ents with incurable cancer. Although communica on
is an issue throughout the trajectory of their illness, most
important is the transi onal period between the ambula-
tory phase and the terminal phase of cancer.46-49 Mul ple
studies highlight the persistence of inadequate patient-
clinician communica on with pa ents with advanced can-
cer.50,51 Another important body of research shows a strong
associa on between pa ent-clinician communica on and
pa ents’ prognos c understanding and decision-making, sug-
ges ng that the quality or effec veness of communica on can
have a real impact on the care pa ents receive at the end of
life.11 We have already highlighted that pa ents do indeed
want to know about their prognoses, even when the news
is not good, and that they want to know about op ons for
care at the end of life.19,52 Such communica on is associated
with pa ents’ receipt of higher-quality care near death.51,53 In
addi on, evidence shows a link between greater prognos c
understanding and decreased preferences for more inten-
sive treatment at the end of life.11
WHAT ONCOLOGISTS TEND TO DO AND WHY
Several studies examine the underlying reasons why oncol-
ogists avoid communica on about prognosis and end-of-life
care. Some oncologists worry that, by sharing prognos c
informa on, they will make pa ents needlessly hopeless
or upset, and/or that pa ents will view them less favorably
as a result.5,51 However, studies show that pa ents with
serious illness do not lose hope, suffer, or die sooner as a
result of end-of-life discussions.54-56 Other factors which
may contribute to lower engagement in prognosis-related
communica on include the complexity of balancing hope
and accurate informa on, variable informa on preferences
among pa ents (and over me within individual pa ents),
and prognos c inaccuracy or uncertainty. One qualita ve
study examining the barriers to high-quality prognosis-related
communica on grouped the barriers into: (1) oncologist-
related barriers (personal bond, emotional discomfort),
(2) patient-related barriers (patient characteristics, di-
versity, language barriers), and (3) family-related barriers
(differen al belief in or acceptance of provided prognos c
informa on).57
Because a full review of all of the complex factors that
contribute to lower-quality prognosis-related communica-
on is beyond the scope of this ar cle, we choose to focus
on oncologist-specific factors. We suggest that oncologists’
experience and comfort with managing pa ents’ reac ons
to nega ve informa on is a centrally important barrier that
contributes substan ally to the lack of prognosis-related
communica on described in the literature.
A large body of evidence suggests that roughly one-quarter
to one-third of oncologists avoid or engage rarely in prog-
nosis related communica on, or lack skills/ap tude in this
area. For example, in the largest study done to date among
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COMMUNICATING PROGNOSIS IN THE ERA OF EXCEPTIONAL RESPONDERS
pa ents with cancer receiving pallia ve chemotherapy,
pa ents reported that prognosis was discussed by medical
oncologists in only 39% of cases.47 In a longitudinal study of
hospitalized pa ents for whom death was believed immi-
nent, 62% of families reported that the a ending physician
never discussed the possibility of death with them, and that
no one discussed the possibility of death with the pa ent in
39% of cases.48 In a review of 37 studies about prognos c
awareness, 75% of pa ents were found to be unaware of
their poor prognosis.4 Similarly, when nurses were surveyed
about their observa ons of the oncologists with whom
they worked, 26% of oncology nurses disagreed or strongly
disagreed that their physicians were skilled at prognosis-
related communica on; 30% of nurses felt that oncologists
rarely/never addressed end-of-life issues early in the course
of their illness, and 33% of nurses agreed that, when pa-
ents did not appear to understand their prognosis, it was
because oncologists had not fully discussed it.58
Some of the barriers that contribute to this omission
of prognosis-related communica on are generalizable to
all interpersonal interac ons. For instance, Maynard de-
scribes social norms that make the delivery of bad news a
“dis-preferred” social ac on. These social interac on norms
bias physicians to avoid or delay bad news, or to a empt
to qualify or mi gate the news. Lamont found that, even
when pa ents specifically requested informa on regarding
prognosis, physicians only provided frank es mates 37% of
the me.17 Observa onal studies suggest that doctors avoid
discussion of the emo onal and social impact of pa ents’
problems because of their own distress or because of a per-
cep on that they did not have the me to do so adequately.
This nega ve emo onal reac on to pa ents’ distress has
been found to nega vely affect doctors themselves and,
in turn, tended to increase pa ents' distress.59 Fear of not
being able to handle pa ents’ distress adequately, or that
disclosure of nega ve news will have a detrimental effect on
their pa ents, are major factors in physicians’ reluctance to
discuss emo onal func oning with pa ents.60
POTENTIAL SOLUTIONS
Could communica on skills training help oncologists who
are reluctant to engage in prognosis-related communica-
on? A systema c review of communica on skills training
for cancer care professionals concluded that communica-
on skills training programs are useful for health profession-
als working in cancer care.61 Such programs are associated
with improvements in communica on skills, knowledge and
confidence, changes in a tudes, and sa sfac on among
health care professionals. Importantly, however, the authors
found no evidence of a change in physicians’ abili es to de-
tect pa ent distress. Evidence is mixed regarding whether
physicians who may lack ap tude for complex interpersonal
communica on can improve with skills training interven-
ons.62-65 For example, one study found that physicians with
low “iden fica on indices” somehow suppress expression
of verbal and vocal cues by pa ents.66 It is unclear whether
this can be remedied with skills-based training. In another
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LEBLANC, TEMEL, AND HELFT
recent study, oncologists who participated in a 1-hour
didac c training on depressive disorders in pa ents with
cancer were be er able to iden fy depressive symptoms
therea er.64
Perhaps we must admit that oncologists are not all equally
skilled at complex communica on. Despite this deficit, high-
quality communica on may be the single most important
determinant of appropriate and values-concordant end-of-
life care for pa ents with advanced cancer. If we were to
think of oncologists as roughly fi ng into three equal com-
munica on groups (highly skilled, moderately skilled, and
lower skilled), it is clear that each of these groups requires
a different approach for interven on. Highly skilled oncolo-
gists need organiza onal support to con nue their excellent
prac ce. Examples of organiza onal support might include
prac ce models that encourage and reward me spent en-
gaging in end-of-life care planning and establishing goals of
care at the end of life. In addi on, such highly skilled oncolo-
gists might serve as mentors or role models within their own
spheres of influence, training and assis ng their colleagues.
Moderately skilled oncologists may comprise the group most
likely to benefit from targeted skills training programs, of
which several high-quality examples have already been de-
veloped (e.g., OncoTalk).67 However, lower-skilled oncologists
may be less likely to benefit from skills training.62 For this
group of oncologists, efforts to improve their pa ents’ end-
of-life care outcomes might produc vely be redirected to-
ward programs that supplement their primary cancer care
of their pa ents, instead of directly a emp ng to improve
their ability to communicate effec vely. Examples of such in-
terven ons include pairing oncologists with skilled oncology
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