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INVITED EDITORIAL
Existential distress in cancer: Alleviating suffering from
fundamental loss and change
Sigrun Vehling
1
|David W. Kissane
2,3,4
1
Department of Medical Psychology,
University Medical Center Hamburg‐
Eppendorf, Hamburg, Germany
2
University of Notre Dame, Sydney, Australia
3
Cunningham Centre, St Vincent's Hospital,
Sydney, Australia
4
Szalmuk Family Psycho‐Oncology Research
Unit, Cabrini Health and Monash Partner's
Comprehensive Cancer Centre, Melbourne,
Australia
Correspondence
Sigrun Vehling, Department of Medical
Psychology, University Medical Center
Hamburg‐Eppendorf, Hamburg 20246,
Germany.
Email: s.vehling@uke.de
Abstract
A severe life threatening illness can challenge fundamental expectations about
security, interrelatedness with others, justness, controllability, certainty, and hope
for a long and fruitful life. That distress and suffering but also growth and mastery
may arise from confrontation with an existentially threatening stressor is a long‐
standing idea. But only recently have researchers studied existential distress more
rigorously and begun to identify its distinct impact on health care outcomes.
Operationalizations of existential distress have included fear of cancer recurrence,
death anxiety, demoralization, hopelessness, dignity‐related distress, and the desire
for hastened death. These focus in varying emphasis on fear of death, concern about
autonomy, suffering, or being a burden to others; a sense of profound loneliness,
pointlessness or hopelessness; grief, regret, or embitterment about what has been
missed in life; and shame if dignity is lost or expectations about coping are not met.
We provide an overview of conceptual issues, diagnostic approaches, and treatments
to alleviate existential distress. Although the two meta‐analyses featured in this
special issue indicate the progress that has been made, many questions remain
unresolved. We suggest how the field may move forward through defining a thresh-
old for clinically significant existential distress, investigating its comorbidity with other
psychiatric conditions, and inquiring into adjustment processes and mechanisms
underlying change in existential interventions. We hope that this special issue may
inspire progress in this promising area of research to improve recognition and
management of a central psychological state in cancer care.
KEYWORDS
cancer, death anxiety, demoralization, existential distress, existential suffering, existential therapy,
fear of cancer recurrence, hopelessness, sense of dignity
1|INTRODUCTION
Illness can take life to the very edge of the abyss, where suffering and
death threaten the beauty and worth of a person, where the myth of
control is realized, where sadness and ambiguity replace creativity and
love, where time is running out ‐here angst about existential issues
challenges our humanity. As Tolstoy wrote, “At one moment a gleam
of hope, the next a raging sea of despair, and always pain, always
misery and pain, over and over again. All this lonely misery was
terrible”(p.146, The Death of Ivan Ilyich
1
). Tolstoy describes Ilyich as
trapped by his progressive illness, struggling and writhing in a “black
sack”from which there was no escape, aware that every moment,
“he was drawing nearer and nearer to what terrified him”(p.159).
Although existential suffering in the context of life‐threatening
illness has long been called to attention,
2-4
only recently have
researchers studied this phenomenon more rigorously. Common to
this proliferating body of literature is the conceptualization of existen-
tial distress as a distinct, painful psychological state that
5-10
Received: 21 August 2018 Accepted: 26 August 2018
DOI: 10.1002/pon.4872
Psycho‐Oncology. 2018;1–6. © 2018 John Wiley & Sons, Ltd.wileyonlinelibrary.com/journal/pon 1
1. results from a stressor that challenges fundamental expectations
about security, interrelatedness with others, justness, controllabil-
ity, certainty, and hope for a long and fruitful life;
2. brings a flood of distressing emotions including fear, outrage
and horror at the possibility of death; concern about autonomy,
suffering, or being a burden to others; a sense of profound
loneliness, pointlessness, or hopelessness; grief, regret, or
embitterment about what has been missed in life; and shame
if dignity is lost, doubt and disbelief prevail, or expectations
about coping are not met;
3. has been operationalized by the constructs of fear of cancer
recurrence,death anxiety,demoralization,dignity‐related distress,
hopelessness,spiritual distress,and the desire for hastened death,
which include the aforementioned facets in varying combination
and emphasis;
4. fluctuates and occurs on a continuum of severity, where severe
and enduring levels are clinically significant and maladaptive in a
noteworthy subgroup;
5. may occur comorbidly with other psychiatric disorders but also in
their absence, when physical pain is well treated, social support
is available, and the person has been perceived as robust; and
finally
6. has a significant impact on health care outcomes.
Two meta‐analyses featured in this issue
11,12
illustrate the progress
of the last decade. Yet there is much uncertainty about how to
recognize and address existential distress in cancer care. Much
remains to be learned about this crucial state of mind. This special
issue brings together different lines of current research in the hope
of deepening our understanding of this phenomenon. We begin by
posing a set of conceptual and practical questions, reviewing what
is known, and identifying what needs to be addressed to move the
field forward.
2|HOW DOES EXISTENTIAL DISTRESS
ARISE?
That distress and suffering but also growth and mastery may arise
from confrontation with existential threat is a long‐standing idea. Long
ago, Jaspers
13
identified that a life‐threatening disease created a limit
situation. Although they are givens of our human nature, the finitude
of life, any restriction to freedom, reduction of meaning, or isolation
from others are thoroughly unwelcome yet inescapable eventualities.
Cancer brings such losses through a shortened lifespan, prognostic
uncertainty, altered relationships, and impaired physical functioning,
autonomy, and controllability.
7,14,15
When personal beliefs and goals
are disrupted, individuals may renegotiate what is meaningful.
16
Salander
17
highlights how illness also interferes with the ability to
continue a daily routine that provided security and a sense of purpose,
masking the limits of our human existence. The idea that attaching to
normality can be a source of adjustment fits well with Folkman's
18
observation that “infusing ordinary events with meaning”helps
ameliorate stress from loss and uncertainty.
Fear of cancer recurrence has been one recent focus of
inquiry.
19
Its conceptual closeness to death anxiety is supported by
a recent integrative model identifying threat of loss and death,
ongoing uncertainty and limited control, and continual reminders of
cancer as relevant sources of anxiety for all patients with cancer.
20
Advanced cancer brings fear of the process of dying, its conse-
quences for close others, regret about not having reached important
goals and being a burden, well exemplified by studies using the
Death and Dying Distress Scale (DADDS) and the Patient Dignity
Inventory (PDI).
21,22
Similar fears may underlie the fear of recurrence
in cancer survivors. The application of traditional views about death
anxiety (eg, Terror Management Theory) to the cancer context may
have obfuscated these similarities. Their premise is that humans
need to deny death because the related idea of nonexistence is
too terrifying.
23
The responses of individuals with cancer may
however be more complex and not fully understood by denial
motivations. For death anxiety and fear of cancer recurrence alike,
both very low levels (over‐avoidance) and very high levels (over‐
rumination, excessive worry) have been found to be maladap-
tive.
20,24
A better understanding of the dynamics of how individuals
approach versus deflect from existential threat would be of value to
psycho‐oncology interventions.
25
A renewed interest in cognitive‐
existential interventions for fear of cancer recurrence supports this
direction.
19,26
An et al
27
in this issue show for the first time a close link between
death anxiety as assessed by the DADDS and demoralization. The
latter is characterized by feeling trapped and helpless, of having failed
one's own or others' expectations, and that life is pointless looking
forwards.
28
A prospective analysis could extend findings by An
et al
27
that the loss of morale may underlie death anxiety and show
how both states develop over time.
Interested in why and how individuals experience different
patterns of existential distress when confronted with cancer, Lo
29
applies Erikson's formulation of developmental conflicts. Existential
themes are organized in layers that can be activated differentially
by severe illness. Firstly, illness can interfere with individuals'
intrapersonal “solutions”for specific developmental challenges—
higher existential distress may result, for example, when a person's
sense of identity is closely linked to physical appearance and
functioning (see Bickford et al
30
for an illustration). Such struggle
may become even more challenging in advanced disease, when a
shortened life expectancy limits generativity and prompts life review.
Masterson and colleagues
31
showed that 72% of patients with
advanced cancer reported at least one aspect of unfinished business,
with over half of these responses being related to family, relation-
ships, and realization of personally meaningful activities. Lo's
29
developmental perspective highlights how what is of meaning and
value in life may be closely linked to the individual pattern of
personal losses and changes.
Authors disagree about the relationship between existential and
spiritual distress. Some understand spiritual distress as linked to a
crisis in belief or loss of connection to a higher being.
32
Others do
not see themselves as spiritual or religious and prefer the concept of
existential distress.
17
A practical approach could be to understand
spiritual distress as one aspect of existential distress.
8
2VEHLING AND KISSANE
3|WHOISATRISKFORANDWHATHELPS
EXISTENTIAL DISTRESS?
Regarding demographic and disease‐related risk factors, a similar
mixed pattern of findings has emerged for existential as for cancer‐
related distress in general. Women, those who are single, carry a
higher symptom burden and receive less support report higher
existential distress.
33,34
Complex interactions of these factors may
underlie the mixed findings across different cancer populations.
Looking deeper, we may ask “What is helpful about perceived
positive social support in the context of uncertainty?”Soriano et al
35
studied couples' responses to uncertainty, where the need for
connectedness was high, yet the process under study (sharing positive
events) not always sufficient to assuage existential treat. Health care
providers can bolster support and trust through respecting individual
desires for information and decisional autonomy and protecting
personhood to prevent or lower demoralization in patients with
advanced cancer.
36,37
Similarly, we may ask “what coping strategies ameliorate fear of
recurrence?”Patients with high intolerance of uncertainty and positive
metacognitive beliefs about worry seem at a higher risk to engage in
maladaptive behavioral processes such as avoidance, checking
behaviors, and seeking constant reassurance from physicians.
38
However, patients do not adopt the same coping responses,
exemplified by Galica et al
39
who found that the dimensions of the
Fear of Cancer Recurrence Inventory (FCRI) did not load on a single
second‐order factor, indicating that the subscales, including coping
strategies, should not be combined into a total fear of cancer recur-
rence score.
Taken together, we observe that the study of adjustment to
existential challenge is in its relative infancy. Progress will likely occur
with richer etiological models and application of sophisticated
methods such as within‐person analyses
35
that test hypotheses about
individual adaptation mechanisms.
4|WHAT IS THE THRESHOLD FOR
CLINICALLY RELEVANT EXISTENTIAL
DISTRESS?
There is no current consensus about the criteria that signify the
clinical threshold at which existential distress ought to be deemed
pathological. However, efforts to approach a definition are underway.
A recent Delphi study suggested that fear of cancer recurrence be
considered clinically problematic when (1) preoccupation with
thoughts of recurrence or progression cause intense distress; (2)
unhelpful coping strategies are adopted; (3) daily functioning is
impaired; and (4) there is limited ability to plan for the future.
40
Simi-
larly, studies using interview criteria from the Diagnostic Criteria for
Psychosomatic Research–Demoralization
41
report a very close associ-
ation with scores on the Demoralization Scale. This is coherent with
demoralization being pathological when (1) over a period of two or
more weeks, (2) difficulty in coping with a stressor occurs, causing
the person to feel trapped, helpless, and unable to control or change
the predicament; (3) a sense of failure results in meeting the
expectations of self or others; and (4) a resultant sense of aloneness,
hopelessness, or pointlessness develops due to lack of a worthwhile
future.
42
The interesting overlaps between these definitions suggest that
their conceptual integration could be worthwhile. One idea that would
resonate well with its stressor‐bound nature is to think of clinically
elevated existential distress as an adjustment disorder, although
criteria for the latter diagnosis have been vague and based on the
clinician's judgment. The difficulty to cope, perceived incompetence
to plan for the future, and impaired function with significant distress
are common attributes that align with current specifications of
adjustment disorder in DSM and ICD. This perspective would not
understand existential distress‐adjustment disorder as a “subthreshold
problem”(hierarchically only diagnosed when criteria for depressive or
anxiety disorders are not fully met) but a distinct entity that can be
related to intense suffering. It is also coherent with the findings of
Bobevski et al,
43
indicating a distinct and significant subgroup (13%)
with moderate demoralization, significant functional impairment and
increased risk for suicidal ideation. Two dominant symptom clusters
of adjustment difficulty could exist: (1) worried preoccupation with
what could happen in an excessive attempt to control and (2) the
disheartened despair about what cannot happen.
5|HOW FREQUENT IS EXISTENTIAL
DISTRESS IN PATIENTS WITH CANCER?
In the absence of consensus‐based assessment standards, only
preliminary data are available. Nanni and colleagues
41
have found a
frequency of 25% using the DCPR interview for demoralization,
similar to one systematic review,
44
whereas others have found a lower
prevalence of clinically significant demoralization in the 13% to 18%
range.
34
Fear of recurrence is also high: A systematic review reported
a prevalence of 49% using various criteria and instruments.
33
Using
the brief 6‐item Cancer Worry Scale, Custers et al
45
found that half
suffered from this distress, while using the Patient Dignity Inventory,
Bovero et al
46
reported one fifth distressed.
6|THE COMORBIDITY OF EXISTENTIAL
DISTRESS WITH ANXIETY AND DEPRESSION
The clinical utility of the concept of existential distress is its differen-
tiation from other forms of distress, although some comorbidity with
other psychiatric disorders is inevitable. Existential distress has been
distinguished from depression because a lack of pleasure and lowered
mood need not be present, and from anxiety disorders because the
explicit focus is on a life‐threatening disease.
47,48
Empirically, high
levels of fear of recurrence were present in 13% of patients in the
absence of an anxiety disorder,
49
and high levels of demoralization
in 14% in the absence of anxiety or mood disorders.
50
Also, symptom
classification studies point towards a differentiation of anhedonia and
demoralization.
51
Applying latent class differentiation, Bobevski et al
43
found that demoralization was present in two groups, where one had
severe symptoms of anxiety and depression with high levels of
demoralization (10%) and the second was characterized by moderate
VEHLING AND KISSANE 3
demoralization and low anxiety and depression (13%). These results
are coherent with the idea that demoralization can occur indepen-
dently and also as a result of high levels of depression and anxiety.
Self‐report measures of existential distress have all demonstrated
moderate to high correlations with those of depression and anxiety,
typically ranging from 0.33 to 0.72,
50
comparable to the size of
correlations between self‐reported anxiety and depression.
The observation that many essential characteristics of existential
distress are not adequately covered by current psychiatric nosology
is supported by the significant subgroups of patients with moderate
to high existential distress but no mental disorder. We are not pathol-
ogizing normal human experience, as some existential distress is surely
part of our humanity, but rather searching for diagnostic categories
that help to recognize severe and maladaptive existential states, thus
empowering these patients to receive appropriate treatments.
7|UNRECOGNIZED EXISTENTIAL
DISTRESSANDHEALTHCAREOUTCOMES
One important rationale behind the study of existential distress is that
its management can reduce the risk for suicidal ideation, mental
disorders, nonadherence to treatment, and low quality of death and
dying. Fear of cancer recurrence has been related to lower quality of
life, reduced functioning and problematic health behaviors,
33
and
demoralization showed an independent impact on suicidal ideation
beyond mood and anxiety disorders.
50
When studying the relationship between existential distress and
health outcomes, especially quality of life, researchers need to be
aware of a potential item overlap between instruments. To the extent
that existential distress measures include items that refer to well‐being
or its lack, it will not be surprising that they correlate closely with
quality of life.
17
While some overlap with outcome measures may be
unavoidable, studies should use existential distress measures based
on a clear theoretical framework. The aim is to test prospectively their
potential unique predictive impact on health care‐relevant outcomes,
while controlling for established factors such as anxiety, depression,
and physical symptom burden.
8|HOW DO WE AMELIORATE
EXISTENTIAL DISTRESS?
Interventions to relieve existential pain have received much less atten-
tion than those for anxiety and depression. The two meta‐analyses
featured in this issue reflect substantial progress since the review by
LeMay and Wilson.
10
Bauereiss et al
11
have identified 30 RCTs testing
existential therapies in predominantly advanced cancer patients,
including trials of Supportive‐Expressive Group Therapy, Cognitive‐
Existential Group Therapy, Dignity Therapy, Meaning‐Centered
Psychotherapy, Managing Cancer and Living Meaningfully (CALM)
Therapy, and the Life Review, Narrative, Hope, and Meaning‐Making
Intervention. While significant small to moderate pooled effects on
post‐treatment quality of life and existential well‐being have emerged
for existential therapies over control conditions, effects on anxiety and
depression were significant only after exclusion of four studies with
baseline group differences suggesting randomization difficulties. Two
recent large trials with significant small effects on depression
52,53
were published after this analysis. All told, clear benefits arise from
existentially oriented psychotherapy.
Looking specifically at fear of cancer recurrence, Hall et al
12
identified 19 studies of the efficacy of cognitive‐behavioral, relaxation,
mindfulness, and mixed mind‐body interventions. They found small to
medium effects compared with control conditions that were not
moderated by type of treatment. Future work may build on what
has been learned from earlier cognitive‐existential approaches
26
and
integrate CBT‐skills with death anxiety interventions.
54
The techniques used in effective interventions for existential con-
cerns are heterogeneous: shared identification of meaningful activity
and priorities, review of strengths, accomplishments, and the life story
including missed opportunities or regrets, crafting a legacy document,
open exploration of losses and death‐related fears, support for uncer-
tainty, and mentalizing death to understand and achieve a sense of
mastery over what the future might hold. More study of the process
of therapy and what induces change is needed.
The rareness of suicide has led to few prevention studies, yet the
international take‐up of medically assisted dying creates an opportu-
nity to see if psychotherapeutic interventions can prevent the prema-
ture ending of life based on fear of the future and demoralization.
Banyasz et al
55
suggest that an existential perspective can substan-
tially improve understanding and relieve suicidal ideation. Attention
to caregivers and their needs should always be part of existentially ori-
ented work.
56
9|SUGGESTIONS FOR FUTURE RESEARCH
The contributions featured in this special issue reflect the current
state of the art with its emerging maturity, while opening up many
questions at the same time. We believe that much more integration
is needed and that the link between existential stressors, adjustment
processes, and existential distress patterns needs further inquiry.
Clearly, a threshold for what characterizes clinically relevant exis-
tential distress needs to be established. The high correlation between
existential distress constructs suggests that greater consensus is
possible about diagnostic categories, which would, in turn, lead to
better recognition and treatment. Such studies should be longitudinal
and include diverse populations of cancer patients to enable more
generalizable conclusions about the relevance of existential distress.
There are topics that have received less attention in this special
issue. Although relational aspects were relevant to some studies,
existential loneliness, which can result from cancer's challenges to
intimacy, was not studied in detail. Related experiences of not feeling
connected, that no one can help, or that important things have been
left unsaid are featured in several existential distress measures, but
more specific data on these aspects are lacking. Furthermore, only
two studies incorporated the caregiver perspective. Caregivers may
experience their own existential challenges as they observe the
suffering and anticipate the loss of their loved one.
57
Little is known
about the occurrence and relevance of existential distress in
caregivers of cancer patients. Moreover, cultural differences in the
4VEHLING AND KISSANE
expression of existential needs are not well understood. Although
existential concerns are universal, culture and heath care systems
can influence different expressions.
Conversations about existential questions can be challenging.
They may activate a clinician's own death anxiety or identification
with a patient's loss of morale. Yet perhaps the lack of knowledge
about the nature of existential distress and how it can be managed
are the most relevant barriers to any clinician's sense of self‐efficacy
in dealing with existential themes. We hope that this special issue
may inspire progress in this promising area of inquiry to improve
cancer care.
ORCID
Sigrun Vehling http://orcid.org/0000-0001-9314-4326
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How to cite this article: Vehling S, Kissane DW. Existential
distress in cancer: Alleviating suffering from fundamental loss
and change. Psycho‐Oncology. 2018;1–6. https://doi.org/
10.1002/pon.4872
6VEHLING AND KISSANE
