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Existential distress in cancer: Alleviating suffering from fundamental loss and change



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 threshold 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.
Existential distress in cancer: Alleviating suffering from
fundamental loss and change
Sigrun Vehling
|David W. Kissane
Department of Medical Psychology,
University Medical Center Hamburg
Eppendorf, Hamburg, Germany
University of Notre Dame, Sydney, Australia
Cunningham Centre, St Vincent's Hospital,
Sydney, Australia
Szalmuk Family PsychoOncology Research
Unit, Cabrini Health and Monash Partner's
Comprehensive Cancer Centre, Melbourne,
Sigrun Vehling, Department of Medical
Psychology, University Medical Center
HamburgEppendorf, Hamburg 20246,
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, dignityrelated 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 metaanalyses 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.
cancer, death anxiety, demoralization, existential distress, existential suffering, existential therapy,
fear of cancer recurrence, hopelessness, sense of dignity
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
). Tolstoy describes Ilyich as
trapped by his progressive illness, struggling and writhing in a black
sackfrom 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 lifethreatening
illness has long been called to attention,
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
Received: 21 August 2018 Accepted: 26 August 2018
DOI: 10.1002/pon.4872
PsychoOncology. 2018;16. © 2018 John Wiley & Sons, 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,dignityrelated 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
6. has a significant impact on health care outcomes.
Two metaanalyses featured in this issue
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.
That distress and suffering but also growth and mastery may arise
from confrontation with existential threat is a longstanding idea. Long
ago, Jaspers
identified that a lifethreatening 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.
When personal beliefs and goals
are disrupted, individuals may renegotiate what is meaningful.
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
observation that infusing ordinary events with meaninghelps
ameliorate stress from loss and uncertainty.
Fear of cancer recurrence has been one recent focus of
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.
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).
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.
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 (overavoidance) and very high levels (over
rumination, excessive worry) have been found to be maladap-
A better understanding of the dynamics of how individuals
approach versus deflect from existential threat would be of value to
psychooncology interventions.
A renewed interest in cognitive
existential interventions for fear of cancer recurrence supports this
An et al
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
A prospective analysis could extend findings by An
et al
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
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 solutionsfor 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
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
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
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.
Others do
not see themselves as spiritual or religious and prefer the concept of
existential distress.
A practical approach could be to understand
spiritual distress as one aspect of existential distress.
Regarding demographic and diseaserelated 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.
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
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.
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.
However, patients do not adopt the same coping responses,
exemplified by Galica et al
who found that the dimensions of the
Fear of Cancer Recurrence Inventory (FCRI) did not load on a single
secondorder 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 withinperson analyses
that test hypotheses about
individual adaptation mechanisms.
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.
larly, studies using interview criteria from the Diagnostic Criteria for
Psychosomatic ResearchDemoralization
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
The interesting overlaps between these definitions suggest that
their conceptual integration could be worthwhile. One idea that would
resonate well with its stressorbound 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 distressadjustment 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,
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.
In the absence of consensusbased assessment standards, only
preliminary data are available. Nanni and colleagues
have found a
frequency of 25% using the DCPR interview for demoralization,
similar to one systematic review,
whereas others have found a lower
prevalence of clinically significant demoralization in the 13% to 18%
Fear of recurrence is also high: A systematic review reported
a prevalence of 49% using various criteria and instruments.
the brief 6item Cancer Worry Scale, Custers et al
found that half
suffered from this distress, while using the Patient Dignity Inventory,
Bovero et al
reported one fifth distressed.
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 lifethreatening disease.
Empirically, high
levels of fear of recurrence were present in 13% of patients in the
absence of an anxiety disorder,
and high levels of demoralization
in 14% in the absence of anxiety or mood disorders.
Also, symptom
classification studies point towards a differentiation of anhedonia and
Applying latent class differentiation, Bobevski et al
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
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.
Selfreport 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,
comparable to the size of
correlations between selfreported 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.
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,
demoralization showed an independent impact on suicidal ideation
beyond mood and anxiety disorders.
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 wellbeing
or its lack, it will not be surprising that they correlate closely with
quality of life.
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 carerelevant outcomes,
while controlling for established factors such as anxiety, depression,
and physical symptom burden.
Interventions to relieve existential pain have received much less atten-
tion than those for anxiety and depression. The two metaanalyses
featured in this issue reflect substantial progress since the review by
LeMay and Wilson.
Bauereiss et al
have identified 30 RCTs testing
existential therapies in predominantly advanced cancer patients,
including trials of SupportiveExpressive Group Therapy, Cognitive
Existential Group Therapy, Dignity Therapy, MeaningCentered
Psychotherapy, Managing Cancer and Living Meaningfully (CALM)
Therapy, and the Life Review, Narrative, Hope, and MeaningMaking
Intervention. While significant small to moderate pooled effects on
posttreatment quality of life and existential wellbeing 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
were published after this analysis. All told, clear benefits arise from
existentially oriented psychotherapy.
Looking specifically at fear of cancer recurrence, Hall et al
identified 19 studies of the efficacy of cognitivebehavioral, relaxation,
mindfulness, and mixed mindbody 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 cognitiveexistential approaches
integrate CBTskills with death anxiety interventions.
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 deathrelated 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 takeup 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
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.
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.
Little is known
about the occurrence and relevance of existential distress in
caregivers of cancer patients. Moreover, cultural differences in the
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 selfefficacy
in dealing with existential themes. We hope that this special issue
may inspire progress in this promising area of inquiry to improve
cancer care.
Sigrun Vehling
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How to cite this article: Vehling S, Kissane DW. Existential
distress in cancer: Alleviating suffering from fundamental loss
and change. PsychoOncology. 2018;16.
... 1 Existential distress is frequently a concern for people with an advanced progressive illness, irrespective of culture or type of disease. 1 Anxiety, worry, uncertainty, loss of control and social role are common. [2][3][4][5] Some people find it hard to engage in meaningful activities and relationships, may lose hope, and experience anticipatory grief . 6,7 Regrets can occur where there is discrepancy between how people want things to happen and how they actually happen. ...
... These include regrets due to unfinished role responsibilities and broken relationships. 4,6 Caregivers of people with an advanced progressive illness can also experience depression, anticipatory grief, loneliness, and a disturbance in their sense of meaning and purpose. 8 Increases in psychological symptoms such as anxiety and depression, as well as physical symptoms such as fatigue and pain due to their caregiver role is also common. ...
... 11,12 Evidence based interventions that help patients and caregivers recognise and manage psychological distress in the context of deteriorating health and bereavement are vital for high quality palliative care. 4,13 Staff caring for people with an advanced progressive illness are at risk of stress, distress and burnout. This is partly due to the typical demands associated with working in healthcare such as unmanageable workloads and staff shortages, but also because of regular exposure to death, grief and loss. ...
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Background: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. Aims: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. Design: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. Results: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. Conclusion: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff.
... In advanced cancer, it is now well-known that the confrontation with fundamental changes and losses triggered by the diagnosis of an incurable malignancy can cause existential distress. 40 Existential concerns have hardly been investigated in haematological malignancies, in which a risk of dying coexists with a real chance of cure. Few studies in the allo-SCT context have investigated existential concerns. ...
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Introduction Although allogeneic stem cell transplantation (allo-SCT) is a curative treatment for many haematological malignancies, it is often associated with a high morbidity and mortality. Yet, little is known about the needs for supportive and palliative care among allo-SCT recipients. Moreover, targeted interventions that reduce symptom burden and suffering are still lacking. The present study aims to inform a supportive-palliative care intervention for patients with allo-SCT and their informal carers by exploring their experience and assessing their needs, especially their existential concerns, regarding four research topics: symptom burden and quality of life; coexistence of a chance for cure and a relevant risk of dying; change in goals of care; dying phase. Methods and analysis This is a descriptive mixed-methods study in progress with a convergent parallel design. Data on the four research topics will be collected and analysed separately in three steps: (1) qualitative semi-structured interviews among 20 patients, 20 informal carers and 12 healthcare providers (HCPs) and focus groups among 12–24 HCPs; (2) a quantitative cross-sectional survey with validated questionnaires and self-developed questions among 100 patients, 100 informal carers and 50 HCPs; (3) a retrospective case analysis of all deceased patients who underwent an allo-SCT between 2010 and 2019, with collection of quantitative and qualitative data. The qualitative and quantitative data sets will be finally merged for comparison and interpretation. Results will serve to develop a supportive-palliative care intervention. Ethics and dissemination The Ethics Commission of the Faculty of Medicine of the University of Cologne approved this study (20–1370_2). The study results will be published in peer-review journals, be presented at congresses and will be translated into clinical practice through the development of the palliative-supportive care intervention. Trial registration number DRKS00027290 (German Clinical Trials Register).
... It can also have emotional and psychological effects (2). Cancer can bring human life to the edge of the abyss, where one realizes that control is a myth, grief, and ambiguity replace creativity and love, and time rushes toward an end; indeed, existential concerns about health status cause challenges for patients (3). Clinically, existential issues are crucial for cancer patients (4), and existential guilt is particularly important. ...
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Context: Existential guilt is an important concept in cancer patients. However, the literature shows that the components of this concept are not well defined and specified. Hence, this study aimed at enhancing understanding of the characteristics of existential guilt and its differentiation from other similar concepts in the field of cancer. Evidence Acquisition: Focusing on cancer patients, Walker & Avant's approach was followed to clarify and analyze the concept of existential guilt. So, Web of Sciences (ISI), PubMed, ProQuest, Scopus, PsycINFO databases, and Google Scholar were searched, using 'existential guilt', 'guilt', and 'cancer' keywords to identify relevant studies with no time limitation. After screening and evaluation, 58 articles were identified, of which 26 were analyzed. Results: Initially, definitions, characteristics, antecedents, and consequences of the existential guilt concept were introduced. Then, a case model was explained to create a more clarified understanding of the concept and, eventually, some implications for the approach to cancer patients were proposed. Conclusions: The existence of different definitions and separate research pathways about the concept of existential guilt may indicate a sense of scatteredness. However, as shown in this study, one can come to a widely accepted understanding as well as a differential understanding of this concept; this clarification can, in turn, result in efficient and comprehensive psychological attention to cancer patients. Indeed, this concept analysis can pave the way for clinical interventions, operationalization, and research on this topic and population
... Psychiatric disorders are common, with the prevalence of anxiety and depressive disorders estimated at around 10% and 15%, respectively, in patients with cancer (Mitchell et al. 2011). Additionally, this confronting experience can induce existential distress by challenging one's fundamental expectations about various aspects of life (Vehling and Kissane 2018). Individuals with progressive disorders may experience a demoralization syndrome, a welldefined state of existential distress characterized by feelings of hopelessness, meaninglessness, and a sense of failure. ...
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Objectives: People with terminal illnesses often experience psychological distress and associated disability. Recent clinical trial evidence has stimulated interest in the therapeutic use of psychedelics at end of life. Much uncertainty remains, however, mainly due to methodological difficulties that beset existing trials. We conducted a scoping review of pipeline clinical trials of psychedelic treatment for depression, anxiety, and existential distress at end of life. Methods: Proposed, registered, and ongoing trials were identified from 2 electronic databases ( and the World Health Organization International Clinical Trials Registry Platform). Recent reviews and both commercial and non-profit organization websites were used to identify additional unregistered trials. Results: In total, 25 studies were eligible, including 13 randomized controlled trials and 12 open-label trials. Three trials made attempts beyond randomization to assess expectancy and blinding effectiveness. Investigational drugs included ketamine (n = 11), psilocybin (n = 10), 3,4-methylenedioxymethamphetamine (n = 2), and lysergic acid diethylamide (n = 2). Three trials involved microdosing, and fifteen trials incorporated psychotherapy. Significance of results: A variety of onging or upcoming clinical trials are expected to usefully extend evidence regarding psychedelic-assisted group therapy and microdosing in the end-of-life setting. Still needed are head-to-head comparisons of different psychedelics to identify those best suited to specific indications and clinical populations. More extensive and rigorous studies are also necessary to better control expectancy, confirm therapeutic findings and establish safety data to guide the clinical application of these novel therapies.
... advanced cancer patients report moderate to high levels of ED [5][6] . Moreover, a considerable body of literature has linked ED to a range of adverse outcomes, including decreased psychological well-being, poor quality of life (QoL), suicidal ideation, and loss of the will to live [7][8][9] . ...
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Objective: This study aimed to investigate the current state of existential distress and identify its associated factors in advanced cancer patients. Methods: A cross-sectional study was conducted among 352 advanced cancer patients from three tertiary hospitals in Fujian, China. Participants were invited to finish Existential Distress Scale, Number Rating Scale, Self-perceived Burden Scale, Quality of Life Concerns in the End of Life Questionnaire, and Hospital Anxiety and Depression Scale. Result: A total of 352 advanced cancer patients were recruited in this study. The average score of existential distress was 8.48±7.12 among advanced cancer patients. Multiple regression showed that its associated factors were depression (β= 0.32, P=0.000), self-perceived burden (β= 0.18, P=0.001), spouse (β= -0.10, P=0.050), and government subsidies (β= 0.17, P=0.001). The factors accounted for 30.1% of the total variance in existential distress (F=8.472, P<0.001). Conclusion: Existential distress is positively influenced by depression, self-perceived burden, and government subsidies, but negatively influenced by a spouse among advanced cancer patients. Depression is its most important risk factor, and future existential distress interventions could target at depression.
Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.
Leukemia and lymphoma, categorized as hematological malignancies (HM) or “liquid tumors,” comprise multiple diagnoses, acute and chronic, that vary in treatment, physical impact, and outcome. This chapter provides an overview of the most common types of HM and focuses on identifying clinical challenges that may present throughout the illness trajectory, including during bereavement, with recommended interventions to support the HM patient and their friends and family. In the course of this discussion, we note the differences between HM and solid tumor cancer experiences; in particular, we consider how HM is an area of oncology characterized by outstandingly specialized and technical “medicalese” and the consequences of this for the patient and their friends and family. We also engage in a critical examination of the persistent legacy of healthcare disparities among this patient population, especially for those who have been historically marginalized due to racial and geographical location. The chapter concludes with a reflection on a neglected area of social work healthcare through a narrative of the metaphorical journey taken by patients with HM and their communities. KeywordsSocial workHematological malignancyAcuteChronicInterventionSocial justiceBereavement
Context: Psycho-existential symptoms in palliative care are addressed insufficiently. Routine screening, ongoing monitoring and meaningful treatment of psycho-existential symptoms may contribute to the relief of suffering in palliative care. Objectives: We sought to explore longitudinal change in psycho-existential symptoms following the routine implementation of the Psycho-existential Symptom Assessment Scale (PeSAS) in Australian palliative care services. Methods: Using a multi-site rolling design, we implemented the PeSAS to longitudinally monitor symptoms in a cohort of 319 patients. We assessed change scores for each symptom in groups with mild (≤3), moderate (4-7) and severe (≥8) symptomatology at baseline. We tested significance between these groups and used regression analyses to identify predictors. Results: While one half of patients denied clinically important psycho-existential symptoms, for the remainder, overall, more patients improved than deteriorated. Between 20-60% of patients with moderate and severe symptoms improved, while another 5-25% developed new symptom distress. Patients with severe baseline scores improved significantly more than those with moderate baseline scores. Conclusion: As we better recognize through screening patients carrying psycho-existential distress in palliative care programs, there is considerable room for improvement in ameliorating this suffering. Inadequate clinical skills, poor psychosocial staffing or a biomedical program culture may all contribute to inadequate symptom control. Person-centered care necessitates greater attention to authentic multidisciplinary care that ameliorates psycho-spiritual and existential distress.
Being diagnosed with cancer is commonly associated with psychological distress. Especially patients with advanced disease report a range of distinct symptoms that are referred to as existential distress. The conceptualization of existential distress is mainly characterized by the loss of a sense of meaning and purpose in life resulting from the confrontation with a life-threatening disease. Existential distress has a significant impact on health care outcomes and quality of life. It has been found to be associated with suicidal ideation, even in the absence of mental disorders such as depression. Meaning-centered psychotherapy offers effective interventions with regard to reducing existential distress in cancer patients.
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Objective Fear of cancer recurrence (FCR) is defined as “fear, worry, or concern about cancer returning or progressing”. To date, there is only one partially validated model of FCR (Lee‐Jones et al., 1997), so additional model testing is critical to inform intervention efforts. The purpose of this study is to examine the validity of a blended model of FCR that integrates Leventhal's Common Sense Model, Mishel's Uncertainty in Illness Theory, and cognitive theories of worry. Methods Participants (n = 106) were women diagnosed with stage I‐III breast or gynecological cancer who were enrolled in a Randomized Controlled Trial of a group cognitive‐existential intervention for FCR. We report data from standardized questionnaires (Fear of Cancer Recurrence Inventory ‐ Severity and Triggers subscales; Illness Uncertainty Scale; perceived risk of recurrence; Intolerance of Uncertainty Scale; Why do people Worry about Health questionnaire; Reassurance‐seeking Behaviours subscale of the Health Anxiety Questionnaire, and the Reassurance Questionnaire) that participants completed before randomization. Path analyses were used to test the model. Results Following the addition of four paths, the model showed an excellent fit (χ2= 13.39, p=0.20; CFI=0.99; RMSEA=0.06). Triggers, perceived risk of recurrence, and illness uncertainty predicted FCR. FCR was associated with maladaptive coping. Positive beliefs about worrying and intolerance of uncertainty did not predict FCR but led to more maladaptive coping. Conclusions These results provide support for a blended FCR model.
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Purpose Individuals with advanced cancer experience substantial distress in response to disease burden and impending mortality. Managing Cancer And Living Meaningfully (CALM) is a novel, brief, manualized psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. We conducted a randomized controlled trial to compare CALM with usual care (UC) in this population. Methods Patients with advanced cancer were recruited from outpatient oncology clinics at a comprehensive cancer center into an unblinded randomized controlled trial. Permuted block randomization stratified by Patient Health Questionnaire-9 depression score allocated participants to CALM plus UC or to UC alone. Assessments of depressive symptoms (primary outcome), death-related distress, and other secondary outcomes were conducted at baseline, 3 months (primary end point), and 6 months (trial end point). Analyses were by intention to treat. Analysis of covariance was used to test for outcome differences between groups at follow-up, controlling for baseline. Mixed-model results are reported. Results Participants (n = 305) were recruited between February 3, 2012, and March 4, 2016, and randomly assigned to CALM (n = 151) or UC (n = 154). CALM participants reported less-severe depressive symptoms than UC participants at 3 months (Δ = 1.09; P = .04; Cohen’s d = 0.23; 95% CI, 0.04 to 2.13) and at 6 months (Δ = 1.29; P = .02; d = 0.29; 95% CI, 0.24 to 2.35). Significant findings for greater end-of-life preparation at 6 months also favored CALM versus UC. No adverse effects were identified. Conclusion Findings suggest that CALM is an effective intervention that provides a systematic approach to alleviating depressive symptoms in patients with advanced cancer and addresses the predictable challenges these patients face.
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Objective To examine the prevalence and common themes of unfinished business (UB) and its associations with distress among advanced cancer patients. Method 223 patients from a larger RCT of Individual Meaning‐Centered Psychotherapy (IMCP) completed self‐report questionnaires that assessed UB and UB‐related distress, hopelessness, desire for hastened death, anxiety and depression, quality of life, spiritual well‐being and purpose/meaning. UB themes were identified by qualitative analysis of open‐ended data. Results 161 (72%) patients reported the presence of UB. The mean UB‐related distress score was 7.01 (SD = 2.1) out of 10. Results of independent t‐tests showed that patients with UB reported significantly higher levels of anxiety and lower levels of existential transcendence than patients without UB. Linear regression equations indicated that UB‐related distress significantly predicted hopelessness F(1,154) = 9.54, p < .05, R² = .058), anxiety F(1,154) = 4.31, p < .05, R² = .027), personal meaning F(1,136) = 6.18, p < .05, R² = .043), and existential transcendence F(1,119) = 6.7, p < .05, R² = .053). Ten UB themes emerged from open‐ended responses; UB themes were not associated with UB‐related distress or psychological adjustment. Conclusions UB was both prevalent and distressing in our sample. Findings underscore the need to develop and implement interventions designed to help patients resolve or find solace with UB.
Objective Cancer patients often have to face increasing levels of existential distress (ED) during disease progression, especially when nearing death. This cross‐sectional study aimed to assess the prevalence of the dignity‐related existential distress (DR‐ED) in a sample of end‐of‐life cancer patients, and to explore the “Existential distress” Patient Dignity Inventory (PDI‐IT) subscale internal structure and its associations with different coping strategies. Methods 207 cancer inpatients with a Karnofsky Performance Status (KPS) ≤ 50 and a life expectancy of four months or less, have been examined with the following self‐report measures: PDI‐IT, Demoralization Scale (DS‐IT) and Brief Coping Orientation to Problem Experienced (Brief‐COPE). The “Existential distress” PDI‐IT subscale factor structure was explored through principal component analysis, and the DR‐ED associations with the other considered variables were examined through X²‐tests, MANOVA and multivariate regression analysis. Results DR‐ED was a problem/major problem for 18.8% of the patients, especially for the younger (F(1, 205) = 3.40; p = .020) and more demoralized (F(1, 205) = 20.36; p < .001) individuals. Factor analysis supported two dimensions labelled “Self‐Discontinuity” and “Loss of personal autonomy”, accounting for 58% of the variance. Positive reframing (β = ‐.146, p < .05) and self‐blame (β = .247, p < .001) coping styles emerged as DR‐ED significant predictors. Conclusions This study showed how DR‐ED is a relevant problem for patients nearing death and furthermore highlighted two underlying factors. Finally, the research has shown that positive reframing and self‐blame coping styles might be clinically relevant elements for interventions on ED.
Objective The circumstances of advanced cancer can cause considerable psychological distress, including death anxiety and demoralization. Although these states of existential distress have a negative impact on the quality of life of patients with advanced cancer, they are rarely evaluated as outcomes or targets of interventions in this population. In an effort to improve understanding of existential distress, a structural model of relationships among death anxiety, demoralization, symptom burden, and social relatedness was tested in patients with advanced cancer. Methods 307 patients with advanced cancer completed baseline measures including the Death and Dying Distress Scale, the Demoralization Scale, the modified Experiences in Close Relationships Scale, the Life Completion subscale of the Quality of Life Evaluation–Cancer scale, the Memorial Symptom Assessment Scale, and Karnofsky Performance Status. A structural equation model of protective and risk factors for demoralization and death anxiety was tested. Results The final model had good fit (SRMR=0.061; RMSEA=0.077; CFI=0.927; NNFI=0.902) in which death anxiety was positively associated with demoralization (β=0.71), and demoralization was positively associated with symptom burden (β=0.31) and negatively associated with social relatedness (β=‐0.74). Conclusions The findings of this study suggest that demoralization and death anxiety are closely linked in patients with advanced cancer. The contribution of both symptom burden and low social relatedness to demoralization suggests that an integrated intervention addressing both physical and psychosocial disease factors may be most effective at alleviating such states of existential distress.
Objective Fear of cancer recurrence (FCR) is common concern among cancer survivors and the Fear of Cancer Recurrence Inventory (FCRI) is a frequently used measure to assess FCR. Given that the dimensionality of FCR has received recent debate, the overall goal of this secondary analysis was to re‐examine the dimensionality of the FCRI using confirmatory factor analyses (CFA) to compare models of FCR, using data from a large sample of cancer survivors. Methods Three models of FCR (including uni‐dimensional and multi‐dimensional models of the FCRI) were informed by the literature and proposed a priori. Separate CFAs were conducted to test the fit of each model to the data, and models with acceptable fits were compared. Results Of all the tested FCR models, a multi‐dimensional first‐order model aligned with the originally developed 7‐subscale FCRI revealed the best fit to the data (χ²= 3359.135, p<.0001, df=795, RMSEA=0.057 [0.055, 0.059], CFI = 0.897, TLI = 0.888). When this 7‐factor structure was loaded onto a single, second‐order factor of overall FCR, the model fit statistics were slightly poorer (χ²=3459.632, p<.0001, df=807, RMSEA=0.058 [0.056, 0.060], CFI = 0.893, TLI = 0.886). However, the difference between the models was significant (Chi Square Difference =103.142, p<.0001, df=12) indicating that the first‐order model was a better fit to the data. Conclusions These results align with empirical and theoretical literature that support the use of the FCRI as a multi‐dimensional scale. Implications of results are discussed in light of FCR conceptualization and measurement.
Objectives To synthesize the evidence of existential interventions in adult patients with cancer. Methods Embase, MEDLINE, CENTRAL, CINAHL, PsycINFO, PSYNDEX and the WHO ICTRP were searched up until January 26th 2018. Eligibility criteria for studies were 1) adult patients with cancer, 2) evaluation of existential interventions, 3) compared to active/non‐active control, 4) assessing relevant spiritual, psychological or physical outcomes and 5) conducted as randomized controlled trials. Standardized mean differences (Hedges’ g) were calculated and meta‐analyses were conducted using random effects models. Effects were aggregated within four time horizons (post‐treatment; ≤3 months; ≤6 months; >6 months). Heterogeneity was assessed by forest plots and I². Risk of bias was assessed using the Cochrane Risk of Bias Tool. This review has been registered with Prospero (CRD42016042895). Results 3461 records were identified, of which 30 unique studies (3511 participants) were included in the review and 24 studies were included in meta‐analyses. Existential interventions showed significant effects on existential well‐being (g=0.52;CI[0.13;0.91; k=10;I²=85%) and quality of life (g=0.21;CI[0.01;0.42];k=17;I²=75%) at post‐treatment, on hope at post‐treatment (g=0.43;CI[0.12;0.74];k=12;I²=86%) and after six months (g=0.25;CI[0.02;0.48]; k=3;I²=0%) and on self‐efficacy at post‐treatment (g=0.50;CI[0.09;0.90];k=2;I²=0%). No significant effects were found on the remaining outcomes and time points. Significant moderator effects were found for professional background of therapists, intervention concept, number of sessions and setting. Conclusions This systematic review and meta‐analysis provides evidence that adult patients with cancer across all stages and types benefit from existential interventions. Future research should strive towards a higher standardization in particular with respect to outcome assessments.
Background Advanced diseases pose a great burden on patients and go hand in hand with existential concerns. Demoralization is considered as a syndrome of existential distress with a perceived inability to cope with loss of meaning in life and feelings of helplessness and hopelessness. Professional health care providers play an important role in providing support for patients and unfavorable conversational styles in their relationship can increase patient's distress. In this study we examine the association between the patient's perceived relationship to health care providers and demoralization. Methods We used baseline data of a randomized control trial intervention study for advanced cancer patients (UICC‐Stage ≥ III; PHQ ≥ 9 and/or Distress‐Thermometer ≥ 5). We used a subscale of the QUAL‐EC‐P for assessing doctor‐patient relationship, Beck Depression Inventory‐II for depressive symptoms, a modified version of the MSAS as physiological symptom checklist and the Demoralization scale to assess demoralization. A hierarchical regression analysis was calculated. Results In our sample of 187 patients with stage III or IV cancer (62% women) demoralization was present in 53.4% (16% moderate demoralization; 37.4% high demoralization) of the patients. Relationship to health care provider was an independent predictor (β=‐.33, t(186)=‐6.70, p<.001) of demoralization. Conclusions Our findings underline the importance of the physician‐patient relationship in the context of coping with existential challenges in advanced cancer patients. Trainings on how to communicate and build a sustainable relationship with patients and their specific needs may increase the buffering effect of social support by the physicians on patient's existential distress.