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

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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 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.
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 PsychoOncology Research
Unit, Cabrini Health and Monash Partner's
Comprehensive Cancer Centre, Melbourne,
Australia
Correspondence
Sigrun Vehling, Department of Medical
Psychology, University Medical Center
HamburgEppendorf, 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, 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.
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
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,
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
PsychoOncology. 2018;16. © 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,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
finally
6. has a significant impact on health care outcomes.
Two metaanalyses 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 longstanding idea. Long
ago, Jaspers
13
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.
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 meaninghelps
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 (overavoidance) 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
psychooncology 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 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
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 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.
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
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
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 ResearchDemoralization
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 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,
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 consensusbased 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 6item 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 lifethreatening 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.
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,
50
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.
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 wellbeing
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 carerelevant 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 metaanalyses
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 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
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 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
26
and
integrate CBTskills 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 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
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 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.
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. PsychoOncology. 2018;16. https://doi.org/
10.1002/pon.4872
6VEHLING AND KISSANE
... Research indicates that cancer patients frequently experience issues with their sense of freedom. 8 Yet, literature concentrating solely on the concept of freedom in cancer patients is scarce, and to our knowledge, none has stated that a cancer diagnosis might confront patients with their inherent freedom. In fact, literature suggests that patients diagnosed with cancer experience a sense of loss of control and autonomy, limiting their freedom of choice. ...
... [58][59][60] A cancer diagnosis can make it difficult for individuals to feel that they have control over their lives. 61,62 The RRMI empowers people to be active in taking responsibility for all aspects of their lives, and to include their intuition in their decision-making processes (Table 1). These are key RRMI lifestyle factors, and are likely contributing factors toward the increased QOL observed in this study. ...
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Introduction: The Radical Remission Multimodal Intervention (RRMI) was developed by Kelly A. Turner, PhD, after analyzing more than 1500 cases of cancer survivors experiencing radical remission (a.k.a. spontaneous regression) across all cancer types and extracting key lifestyle factors shared by these cancer survivors. The RRMI workshops provide instruction on these lifestyle factors to participants with cancer and give them tools to help navigate their cancer recovery journey. This pilot study aimed to evaluate the effect of the RRMI on the quality of life (QOL) of people with cancer. Methods: This was a pre-post outcome study. Data were collected, between January 2019 and January 2022, from 200 eligible adults of all cancer types, who attended the RRMI workshops (online and in-person). Participants were asked to complete questionnaires online, at baseline (i.e., before the intervention) and at month 1 and month 6 post-intervention. The RRMI workshops were led by certified Radical Remission health coaches. Participants completed the RRMI with personalized action plans for them to implement. The primary outcome QOL measure was the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being Scale (FACIT-Sp). Mixed-effects regression models were used to examine differences in FACIT-Sp score between month 1 and baseline, as well as month 6 and baseline. Models controlled for baseline score, covariates (including age, ethnic group, and body mass index), timepoints (month 1 or 6), training type (online or in-person), adherence score, and interaction between timepoints and adherence score. Results: 92% of participants were women, 77% were Non-Hispanic White, 88% were living in the US, and 66.5% were not living alone. One-quarter had breast cancer. Mean age ± SD was 55.3 ± 11.5 years. Final mixed-effects model analyses showed a significant increase in FACIT-Sp score of 9.5 (95% confidence interval [CI]: 6.2-12.8) points at month 1 (P < .0001) and 9.7 (95% CI: 6.4-13.0) points at month 6 (P < .0001) compared with baseline, a 7.7% and 10.8% improvement, respectively. Conclusion: The RRMI was found to significantly improve the overall QOL of participants at month 1. This improvement was maintained at month 6 post-intervention. Our findings suggest that people with cancer can benefit from the RRMI.
... Approximately one in ten patients in the present study reported existential issues. Existential distress has been described by Vehling and Kissane [32] as a "distinct painful psychological state that results from a stressor that challenges fundamental expectations about security, interrelatedness with others, justness, controllability, certainty, and hope for a long and fruitful life". Compared to the stressor of a cancer diagnosis, COPD could be a more diffuse and prolonged stressor, leading to gradual desensitization to existential problems. ...
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Background: Chronic obstructive pulmonary disease (COPD) is marked by severe physical symptoms, impaired quality of life, and high psychological distress. Despite its impact, the identification of not only physical but also psychosocial and existential issues in the clinic lags behind that of other patient groups. Methods: This study aimed to assess physical, psychosocial, and existential issues among patients with COPD using a patient-reported outcome measure for general palliative care (the ‘PRO-Pall’) in a Danish outpatient clinic. We included 115 adults with COPD who completed the PRO-Pall either electronically or in the clinic. Sociodemographic and illness-related data were retrieved from their electronic health records. Results: We found that shortness of breath, tiredness, and difficulty walking were predominant physical issues. Worry about change in social roles was the most frequently reported psychosocial issue, while existential issues were reported by approximately one in ten patients. Most patients (44.5%) felt able to share their feelings with family or friends, and a majority (62.2%) felt their illness-related issues were addressed satisfactorily. Females expressed a greater need for rest and males more frequently reported intimacy issues. Higher COPD-impact on life measured by the COPD Assessment Test was associated with lower ratings on the quality-of-life item of the PRO-Pall independent of age, gender, lung function, and smoking status. Conclusions: Patients reported issues in physical, psychosocial, and existential dimensions of the PRO-Pall. The PRO-Pall shows potential as a broader alternative to measures that focus mainly on physical issues.
... There appears to be a connection between attitudes toward death and mental health, particularly in the case of serious somatic illnesses such as cancer (Eggen et al., 2020;Iverach et al., 2014;Vehling & Kissane, 2018). However, seriously ill patients do not tend to show elevated fear of death scores in general (Şahan et al., 2018;Soleimani et al., 2020). ...
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Research shows the significance of death attitudes for the mental health of somatically ill people, but findings that focus on multidimensionality in processing death are scarce. Patients with Chronic Obstructive Pulmonary Disease (COPD) report shortness of breath, pain and anxiety about suffocation and high mental distress. Utilizing a mixed-methods approach from 64 hospitalized COPD patients, we examined how they cope with mortality. We conducted a narrative interview with two questions. Patients completed the Multidimensional Orientation Toward Dying and Death Inventory (MODDI-F). Findings reveal a spectrum of death-related narratives, with most patients reporting at least 3 different attitudes. The sample showed below average scores in the Rejection of One’s Own Death and Dying subscale of the MODDI-F. Assessing death attitudes using two simple questions proved highly applicable in this population and may serve as a potential approach to engage patients in discussions about existential matters, as suggested in the literature.
... The assessment of psycho-existential symptoms and the associated distress they cause have been historically neglected in palliative care [1]. Whilst physical symptoms are routinely and systematically assessed and managed [2], many continue to suffer existential angst, undetected by the unseasoned clinician and unexpressed or masked by the suffering patient [3,4]. ...
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Background Cancer is a global public health concern that causes psychosocial and spiritual challenges in those who suffer from it and their family caregivers. Meaning‐centered interventions have a positive impact on improving anxiety and depression in patients with advanced cancer. However, the impact of meaning‐centered interventions on existential distress of patients with cancer and family caregivers' mental health is still unclear. Aims To examine the efficacy of meaning‐centered interventions in alleviating existential distress, enhancing quality of life, and fostering a sense of meaning among cancer survivors and their family caregivers. Methods This systematic review and meta‐analysis were conducted according to the Preferred Reporting Item for Systematic Reviews and Meta‐analysis 2020 statement. A comprehensive search was conducted from inception until September 2023 across nine databases: PubMed, Embase, Web of Science, PsycINFO, The Cochrane Library, CINAHL, Scopus, WANFANG, and CNKI. Heterogeneity testing and meta‐analyses were conducted using Review Manger 5.3. We calculated standard mean deviations and 95% confidence intervals and presented forest plots for assessing intervention effects. Two reviewers independently evaluated the risk of bias of all included articles. STATA 17.0 was used for publication bias analysis. Results The review included 25 studies with 2399 participants, and 22 were included in the meta‐analysis. Meaning‐centered interventions enhanced quality of life, alleviated existential distress, and reduced depressive symptoms and cancer‐related fatigue. They did not affect spiritual well‐being. The subgroup analysis showed that the individual form and long‐term intervention (≥3 months) enhanced the quality of life in cancer survivors. Meaning‐centered interventions reduce depression in advanced cancer survivors more than in mixed‐stage cancer survivors. Meaning‐centered interventions significantly enhanced benefit finding for family caregivers. Linking Evidence to Action Meaning‐centered interventions may improve mental health for patients with cancer and their family caregivers. Future research must include diverse cultural perspectives to understand the impact of meaning‐centered interventions on various groups.
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Background Psychedelic-assisted therapy refers to a group of therapeutic practices involving psychedelics taken under therapeutic supervision from physicians, psychologists, and others. It has been hypothesised that psychedelic-assisted therapy may reduce symptoms of anxiety, depression, and existential distress in patients facing life-threatening diseases (e.g. cancer). However, these substances are illegal in most countries and have been associated with potential risks. Objectives To assess the benefits and harms of psychedelic-assisted therapy compared to placebo or active comparators (e.g. antidepressants) for treatment of anxiety, depression, and existential distress in people with life-threatening diseases. Search methods We searched CENTRAL, MEDLINE, Embase, and two trialregisters on 30 March 2024. In addition, we undertook reference checking, citation searching, and contact with study authors to identify additional studies. We used no language or date restrictions. Selection criteria We included randomised controlled trials (RCTs), with no restrictions regarding comorbidity, sex, or ethnicity. Interventions comprised a substance-induced psychedelic experience preceded by preparatory therapeutic sessions and followed by integrative therapeutic sessions. Data collection and analysis We used the standard methodological procedures expected by Cochrane. Main results We included six studies in the review, which evaluated two different interventions: psychedelic-assisted therapy with classical psychedelics (psilocybin ('magic mushrooms') and lysergic acid diethylamide (LSD)), and psychedelic-assisted therapy with 3,4-methylenedioxymethamphetamine (MDMA or 'Ecstasy'). The studies randomised 149 participants with life-threatening diseases and analysed data for 140 of them. The age range of participants was 36 to 64 years. The studies lasted between 6 and 12 months, and were conducted in outpatient settings in the USA and in Switzerland. Drug companies were not involved in study funding, but funding was provided by organisations that promote psychedelic-assisted therapy. Primary outcomes (at 1 to 12 weeks) Anxiety Psychedelic-assisted therapy using classical psychedelics (psilocybin, LSD) may result in a reduction in anxiety when compared to active placebo (or low-dose psychedelic): State Trait Anxiety Inventory (STAI-Trait, scale 20 to 80) mean difference (MD) −8.41, 95% CI −12.92 to −3.89; STAI-State (scale 20 to 80) MD −9.04, 95% CI −13.87 to −4.21; 5 studies, 122 participants; low-certainty evidence. The effect of psychedelic-assisted therapy using MDMA on anxiety, compared to placebo, is very uncertain: STAI-T MD −14.70, 95% CI −29.45 to 0.05; STAI-S MD −16.10, 95% CI −33.03 to 0.83; 1 study, 18 participants; very low certainty evidence. Depression Psychedelic-assisted therapy using classical psychedelics (psilocybin, LSD) may result in a reduction in depression when compared to active placebo (or low-dose psychedelic): Beck Depression Inventory (BDI, scale 0 to 63) MD −4.92, 95% CI −8.97 to −0.87; 4 studies, 112 participants; standardised mean diference (SMD) −0.43, 95% CI −0.79 to −0.06; 5 studies, 122 participants; low-certainty evidence. The effect of psychedelic-assisted therapy using MDMA on depression, compared to placebo, is very uncertain: BDI-II (scale: 0 to 63) MD −6.30, 95% CI −16.93 to 4.33; 1 study, 18 participants; very low certainty evidence. Existential distress Psychedelic-assisted therapy using classical psychedelics (psilocybin, LSD) compared to active placebo (or low-dose psychedelic) may result in a reduction in demoralisation, one of the most common measures of existential distress, but the evidence is very uncertain (Demoralisation Scale, 1 study, 28 participants): post treatment scores, placebo group 39.6 (SEM 3.4), psilocybin group 18.8 (3.6), P ≤ 0.01). Evidence from other measures of existential distress was mixed. Existential distress was not measured in people receiving psychedelic-assisted therapy with MDMA. Secondary outcomes (at 1 to 12 weeks) Quality of life When classical psychedelics were used, one study had inconclusive results and two reported improved quality of life, but the evidence is very uncertain. MDMA did not improve quality of life measures, but the evidence is also very uncertain. Spirituality Participants receiving psychedelic-assisted therapy with classical psychedelics rated their experience as being spiritually significant (2 studies), but the evidence is very uncertain. Spirituality was not assessed in participants receiving MDMA. Adverse events No treatment-related serious adverse events or adverse events grade 3/4 were reported. Common minor to moderate adverse events for classical psychedelics were elevated blood pressure, nausea, anxiety, emotional distress, and psychotic-like symptoms (e.g. pseudohallucination where the participant is aware they are hallucinating); for MDMA, common minor to moderate adverse events were anxiety, dry mouth, jaw clenching, and headaches. Symptoms subsided when drug effects wore oF or up to one week later. Certainty of the evidence Although all six studies had intended to blind participants, personnel, and assessors, blinding could not be achieved as this is very difficult in studies investigating psychedelics. Using GRADE criteria, we judged the certainty of evidence to be low to very low, mainly due to high risk of bias and imprecision (small sample size). Authors' conclusions Implications for practice Psychedelic-assisted therapy with classical psychedelics (psilocybin, LSD) may be effective for treating anxiety, depression, and possibly existential distress, in people facing a life-threatening disease. Psychedelic-assisted therapy seemed to be well tolerated, with no treatment-emergent serious adverse events reported in the studies included in this review. However, the certainty of evidence is low to very low, which means that we cannot be sure about these results, and they might be changed by future research. At the time of this review (2024), psychedelic drugs are illegal in many countries. Implications for research The risk of bias due to 'unblinding' (participants being aware of which intervention they are receiving) could be reduced by measuring expectation bias, checking blinding has been maintained before cross-over, and using active placebos. More studies with larger sample sizes are needed to reduce imprecision. As the US Drug Enforcement Administration (DEA) currently classifies psychedelics as Schedule I substances (i.e. having no accepted medical use and a high potential for abuse), research involving these drugs is restricted, but is steadily increasing.
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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.
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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.
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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.
Article
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.
Article
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.
Article
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.