American Journal of Hospice and Palliative Medicine http://ajh.sagepub.com/
A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care Sophie Robinson, David W. Kissane, Joanne Brooker and Susan Burney AM J HOSP PALLIAT CARE published online 7 October 2014 DOI: 10.1177/1049909114553461 The online version of this article can be found at: http://ajh.sagepub.com/content/early/2014/10/01/1049909114553461
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A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care
American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114553461 ajhpm.sagepub.com
Sophie Robinson, BPsych1,2,3, David W. Kissane, MD, MPM, FRANZCP, FAChPM1,2,3, Joanne Brooker, BSc, GradDipComp, GradDipPsych, PhD2,3, and Susan Burney, BA, GradDipCounsPsych, MHlthSc, FAPS PhD1,2,3
Abstract Demoralization has been the subject of discussion in relation to end-of-life care. It is characterized by hopelessness and helplessness due to a loss of purpose and meaning. The purpose of this review was to consolidate the conceptual understanding of demoralization and argue for its existence as a psychiatric syndrome. The history of the construct is explored, including the nature of existential distress and related psychological conditions that precipitate demoralization. Recent definitions of demoralization are described and differentiated from similar constructs. Future directions are highlighted, specifically in relation to the assessment, diagnosis, and treatment of demoralization in palliative care. Overall, demoralization is a clinically useful construct for those facing existential threat, guiding the clinician toward efforts to restore morale, meaning, and purpose. Keywords demoralization, depression, existential distress, end of life, loss of meaning, terminal, palliative care
A 74-year-old widower and retired gardener, ‘‘Joe’’ was afflicted with multiple squamous cell carcinomas of his head and neck, the result of prolonged sun exposure in years gone by. He had lost the greater part of his nose and both ears. He had enlarged neck nodes with facial palsy. Although provided with a facial prosthesis to cover his wounds, he was often too bothered to wear this. Highly embarrassed by his disfigurement, he withdrew socially only finding enjoyment when spending time with his family. Life had become boring otherwise. He declared, ‘‘What’s the point of going on? My life is meaningless now. I want to die.’’
This case illustration is a common clinical problem in the hospice setting, known as demoralization. As one expression of existential distress, demoralization is characterized by feelings of hopelessness and helplessness due to a loss of purpose and meaning in life.1 Demoralization has been advocated as a potential psychiatric syndrome in palliative care for over 2 decades as the conceptual framework for its existence has been debated.1-3 Although commonly experienced among terminally ill patients, demoralization has been researched in many settings including substance dependence and chronic medical illness.4 The rationale for its importance as a syndrome stems from the associated desire for hastened death that accompanies such feelings of hopelessness and meaninglessness, raising issues of competency in the context of rational or physician-assisted suicide.1 We have recently
published a systematic review of the concept of demoralization syndrome and reported a prevalence rate of 13% to 18% in patients with cancer and palliative care patients.5 The purpose of the current review was to provide a more conceptual understanding of demoralization by integrating past and prior literature on demoralization while also highlighting the key clinical implications that the recognition of demoralization has for palliative care. Specifically, the first aim was to provide a history of the conceptualization of demoralization. A second aim was to define demoralization and differentiate it from related constructs. A final aim was to discuss the future research and clinical needs for demoralization. Overall, adoption of demoralization as a psychiatric syndrome is suggested to ensure adequate care of the palliative care patient.
1
School of Psychological Sciences, Monash University, Clayton, Australia Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia 3 Cabrini Monash Psycho-oncology, Cabrini Health, Malvern, Australia 2
Corresponding Author: David W. Kissane, FRANZCP, MD, MPM, FAChPM, Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Level 3, P Block, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3186, Australia. Email: [email protected]
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The History of Demoralization Existential Distress and Meaning The prominent existential psychotherapist, Irvin Yalom, is central to the discussion on demoralization as a large focus of his work was related to existential distress.6 In Yalom’s text, Existential Psychotherapy, he defined existential psychotherapy as a therapy that is dynamic and focused on the distress that is grounded in the individual’s existence.6 Specifically, Yalom’s work explored the idea that conflict arose when the reality of existence was faced.7 Demoralization can be understood to result from this existential conflict—when a person lacks the resources to cope with such conflict. It was Yalom’s understanding that the benefit of therapy does not come from adherence to an ideological school but rather through exploring an individual’s existence, the relationship with the therapist, the contemplation of choice, and wondering about the meaning of life.6 Another relevant existential therapist and physician was Viktor Frankl who devoted his professional interest to questions of meaning.8 The meaning of life is a philosophical question regarding the significance and value found through an individual’s roles, accomplishments, and sources of fulfillment.9,10 Frankl hypothesized that meaning could be found within any life situation.8 As a survivor of the holocaust and a physician, Frankl argued that society has medicalized the spiritual aspect of the human being and pathologized the innate search for meaning. Frankl termed this search for meaning that makes humans unique as the will to meaning.8 He proposed that with finding meaning, facing any form of adversity was doable. Frankl was the founder of logotherapy, first termed in the 1920s, which was psychotherapy focused on the human spirit. His conceptualization of existential despair was that it is a state of meaninglessness. With further reference to meaning, the concept of the assumptive world is another important construct here. The assumptive world is defined as the unquestioned beliefs an individual holds about himself and the world.11,12 These established beliefs and ideas form the basis from which meaning in life is drawn.9 Without the assumptive world, it would appear that there is no reference point for the individual to draw between what is perceived as meaningful versus meaningless. In addition to meaning, an understanding of coping is also essential to this discussion. Susan Folkman devoted much time to understanding the process of coping.13 Lazarus and Folkman’s original theory of coping focused on studying processes that resulted in the reduction of an aversive state through emotion-based or problem-based responses.13 More recently, however, Folkman realized she had overlooked meaning-based coping in her original formulation.14 She discovered meaning-based coping during a longitudinal study of the partners of men with AIDS who were profoundly stressed from caregiving and bereavement. Folkman found that the caregivers were able to sustain joy and experience both positive and negative psychological states. Interestingly,
she found that this was common rather than just possible. Consequently, Folkman realized that reformulating the meaning of a situation can alter previously held beliefs and goals, potentially enhancing positive feelings during a difficult experience. Thus, she came to appreciate the meaning that caregivers derived from such loving care provision and subsequently theorized meaning-based coping. Having considered the importance of finding meaning through the work of Yalom, Frankl, and Folkman, let us now turn to states where meaning is lost.
Demoralization and Related Conditions Although the term demoralization as a psychological phenomena did not enter the psychiatric literature until the 1970s,15 a number of conditions proposed throughout history have described a similar presentation.1 For instance, as early as the fourth century, spiritual torpor or acedia was a comparable condition.1,16 Acedia is a motivational state, which refers to a loss of hope and feelings of dullness, despair, and meaninglessness.17,18 Writings on acedia originated from the Christian Church, in which the term was used to describe bored monks who had neglected their spirituality.16 Modern researchers have argued that acedia and demoralization were comparable on the basis of the similar loss of attention to what is meaningful about life.1,17 In addition, the giving up–given up complex, social breakdown syndrome, ‘‘giving up,’’ and learned helplessness all have a similar presentation to demoralization, given their focus on hopelessness.1 The giving up–given up complex among the medically ill patients was proposed by George Engel, a psychiatrist from Rochester, New York, who was a doyen of psychosomatic medicine and the father of consultation-liaison psychiatry.19,20 The giving up–given up complex was used to describe a psychological state characterized by hopelessness, helplessness, discouragement, and the perception of being unable to cope.21 When a patient gives up psychologically, their ability to cope with medical illness is considerably weakened.21,22 Similarly, the social breakdown syndrome among the mentally ill patients, proposed by Ernest Gruenberg—another psychiatrist from New York, occurred as a result of extended institutionalization in asylums and was characterized by the loss or deterioration of social and interpersonal skills.23 Likewise, ‘‘giving up’’ was proposed by Art Schmale, a colleague of Engel’s from Rochester,19 as an explanation for the development of physical illness due to the perception of helplessness or hopelessness, contributing to poor self-care.24 The concept of learned helplessness25,26 also has similarities to demoralization.1 Martin Seligman, a researcher from the University of Pennsylvania who worked under Aaron Beck and contributed enormously to self-help and positive psychology therapies, proposed the concept of learned helplessness.25 When events are uncontrollable, the psychological state of helplessness can develop when problem-based coping is
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ineffective.26 Learned helplessness was defined as a conditioned attributional state of perceived absence of control over a situation that could be overcome.25 Seligman argued that an individual deduces that behavior no longer influences outcomes when exposed to uncontrollable aversive events.25 Learned helplessness is therefore a situation in which an individual stops instigating action to impact the outcome. While these terms were being discussed in the literature, Jerome Frank, a Boston psychotherapist who described the common elements to all psychotherapies, proposed the existence of demoralization in the psychotherapeutic setting.15 Frank viewed demoralization as a psychological state that eventuated from an individual experiencing an inability to cope with internal or external stressors that were generally considered as easy to manage. The essence of Frank’s work was the importance of hope in the therapeutic process, highlighting how humans have the ability to perceive the future and how a negative perception can strongly affect the human psyche.27 He saw the loss of morale as central to all mental illnesses.11 According to Frank, the key characteristics of demoralization are ‘‘feelings of impotence, isolation, and despair.’’15(p271) He concluded that when demoralized, selfesteem suffers and rejection is felt due to failing to meet the expectations of others.11,15 Alienation can also be common if meaning is derived from social connections.15 Indeed, such features of isolation and social withdrawal were prominent for Joe in the opening case illustration. Frank contended that demoralization was the motivating factor leading individuals to seek psychotherapy and that people with mental illnesses who do not seek treatment are not demoralized,11,15 a phenomenon he termed the Demoralization Hypothesis.28,29 The majority of his work, however, was based on clinical observations rather than empirical studies.30 Frank’s student, John de Figueiredo, now a clinical professor of psychiatry from Yale University, sustained a lifelong focus on demoralization.28-31 de Figueiredo viewed demoralization as a major public health issue and proposed that the condition consisted of two components, distress and subjective incompetence.28 Distress was conceptualized as any form of psychological suffering such as anxiety, depression, sadness, and anger. Subjective incompetence was defined as a state that resulted from the self-perception of being incapable of appropriate action in demanding circumstances. Yet, it is only when distress and subjective incompetence are experienced concurrently that demoralization presents.28 Finally, de Figueiredo and Frank specified predictors of demoralization: low self-esteem, poor social connections, and general constitutional vulnerability.32 Dohrenwend, Shrout, Egri, and Mendelsohn termed demoralization as a nonspecific psychological distress or a common distress syndrome seen in their studies of people within the community.33 In their theoretical conceptualization of demoralization, these authors proposed a means for measuring this construct using psychiatric screening scales as they regarded demoralization as a single common underlying dimension of psychological distress.30 Dohrenwend and colleagues
developed the psychiatric epidemiology research interview (PERI) as a measurement of demoralization.33 Given its length, however, this tool has scarcely been used to measure demoralization in recent studies. In addition to the discussed researchers, anthropologist and psychiatrist, Arthur Kleinman contributed to the literature on demoralization with his work on illness narratives.34-36 Kleinman argued that demoralization occurred when (1) pharmacological treatment failed to improve symptoms of depression, (2) the symptoms increased in response to particular forms of orthodox medicine, and/or (3) when physical symptoms did not appear to have a known physiological cause.35 Kleinman strongly held that demoralization existed as existential human distress that could be understood by paying close attention to the perceptions of the patient.36 The later work of Frank and Frank articulated similar views to Kleinman.32,36 These researchers believed that it was important to listen closely to the client’s story to understand why some people cope and others do not (ie, constitutional vulnerabilities). Kleinman contended that without paying attention to existential distress, reports of physical symptoms that take origin in the psyche will remain misunderstood.35 All these researchers were influential contributors to the early literature on demoralization. During the late 20th century, several aspects of the construct evolved and established the basis for future studies.36
Current Definitions of Demoralization In later years, an international consortium of researchers, the Bologna Group, investigated demoralization and its prevalence among groups with different medical illnesses.37 These researchers defined demoralization with the Diagnostic Criteria for Psychosomatic Research (DCPR), which includes the following 3 diagnostic criteria: 1.
2. 3.
The patient feels as if they have failed to meet the expectations set by themselves or those around them or experiences a general inability to cope with demands. This results in feelings of helplessness, hopelessness, and a desire to give up. The feelings are prolonged, generalized, and are present for at least 1 month. The feelings directly precede the development of a medical disorder or strengthen its symptoms.37
The Bologna group sustained a long held psychosomatic tradition in postulating that helplessness, hopelessness, and the tendency to give up preceded the development of the medical illness.37 Through clinical observation, these researchers conceptualized demoralization as a psychological state akin to the giving up–given up syndrome. Today, there is less support for this psyche to soma etiological connection.38-40 Rather, the patterns of thinking and behavior may have been long held cognitive schemata, or aspects of the person’s assumptive world, that become activated by the adversity of
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4 illness.40 The predicament of illness and its treatment then likely aggravate these cognitions and they strengthen the development of demoralization. With little focus on the psychosomatic connection, the most recent formulation of demoralization was proposed by Australian psychiatrists Kissane and Clarke.1,41 Stemming from a particular interest in suicide in medically ill patients and physician-assisted suicide, Kissane focused on demoralization as an explanatory source of suicidal thinking in palliative care.42-46 Such research involved advocacy for demoralization as a syndrome, to elucidate its clinical importance as a treatable condition and better focus potential therapeutic interventions.1 Kissane and colleagues considered demoralization as an abnormal response characterized by the key features of loss of meaning and hope. In addition, they have concluded that existential distress is present in demoralization and a desire to die can develop. Indeed, hopelessness has long been recognized as a key predictor of suicidal behavior and was shown to be a stronger predictor of suicide than depression.47,48 Importantly, however, in palliative care patients nearing death, the will to live has been found to vary in response to fluctuations in depression, anxiety, shortness of breath, and sense of well-being.49 This current definition of demoralization, which has evolved from those previously described, is more specific and more readily differentiated from depression. The key focus in this particular conceptualization is on a loss of meaning and purpose. Kissane proposed a set of diagnostic criteria for diagnosing demoralization syndrome.50 It includes: 1. the experience of emotional distress such as hopelessness and having meaning and purpose in life lost; 2. attitudes of helplessness, failure, pessimism, and lack of a worthwhile future; 3. reduced coping to respond differently; 4. social isolation and deficiencies in social support; 5. persistence of the above-mentioned phenomena across 2 or more weeks; and 6. features of major depression have not superseded as the primary disorder. Overall, both the Italian and the Australian definitions of demoralization with set criteria are a step forward in psychiatric assessment. Such assessment of demoralization is important as it helps conceptualize the patient’s symptomatology and aids in the formulation of treatment.2,29 For Joe in the opening case illustration, providing him with a diagnosis of demoralization syndrome would assist his care team in guiding treatment as well as provide a context for both Joe and his family to help in understanding his experience. Nonetheless, those defining demoralization as an abnormal response worthy of a formal diagnosis and clinical attention have faced challenges. Indeed, Sansone and Sansone51 highlighted that in medically ill patients, demoralization may be to some degree normative, given the level of potential psychosocial and physical shortcomings medical problems can create.51 Other
academics have described demoralization as an Adjustment Disorder (defined in the Diagnostic and Statistical Manual of Mental Disorders [DSM])52 or a normal response to the grief stemming from a loss.2,3 These competing conceptualizations may generate confusion and contribute to the difficulty in establishing the credibility of demoralization as a psychiatric syndrome worthy of coding in formal diagnostic systems. Nonetheless, Sansone and Sansone recognized that there must be a dimensional nature to these symptoms, ranging from what would be a normal response to one that was leading to impairment.51 In fact, Kissane had always conceptualized the loss of morale on a spectrum, recognizing that this experience constitutes a range of mental states.42 Specifically, from a mild loss of confidence—disheartenment, to the beginning of losing hope and purpose—despondency, to a state where all hope is lost—despair, through to severe demoralization where meaning and purpose are lost. It is recognized that a moderate level of demoralization may be on a par with DSM Adjustment Disorder; however, psychiatric involvement is worthwhile at the more extreme end of this spectrum, where a loss of meaning, purpose, and hope may contribute to the development of suicidal ideations.53
Differentiating Demoralization From Related Constructs The earlier work of de Figueiredo explored how demoralization differed from depression with reference to motivation.31 Describing motivation as a concept consisting of both magnitude and direction, he argued that in demoralization, subjective incompetence was similar to a loss of direction in motivation, while distress contributed to the change in the magnitude of motivation.30,31 With this considered, an individual who is demoralized even when they have sufficient magnitude of motivation may experience a sense of inadequacy and uncertainty about the future. In depression, however, it is a decrease in motivation that results in inhibited action, even when the direction of action is known. Another key distinction between depression and demoralization is in the experience of pleasure. Depression results in a loss of both anticipatory and consummatory pleasure; however, the experience of demoralization only results in a loss of anticipatory pleasure.54 Pleasure in the present moment is still possible in individuals who are demoralized but not depressed. Indeed in the case of Joe, he was able to feel enjoyment when spending time with his family. Grief has also been discussed as a similar condition to demoralization. Grief, however, is a time-limited emotional reaction to loss,55 generally viewed as a healthy reaction.56 Indeed, as early as 1937, mourning was described as a normal coping process.57 Nonetheless, it is similar to mild forms of disheartenment in that the individual may experience disillusionment such as mild loss of meaning58 and can appreciate that this stems from an external stressor.56 Yet again, grief is different from demoralization, which is related to dysphoria and bitterness about illness, whereas grief is about feelings of distress, shock, and numbness at change and loss of health
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and the yearning for health and well-being.56,58 At the more extreme intensity of grief, where an individual may experience what is termed complicated, prolonged, or traumatic grief, these conditions can become more akin to demoralization. This is because both experiences are characterized by distorted thinking patterns and behavior that is self-destructive.59,60 Pathological grief can be differentiated from demoralization, however, as it originates from different circumstances, as described previously.56 Another potentially overlapping yet different psychological response to demoralization is shame. Shame is an affective state characterized by the experience of failure and feelings of responsibility for the failure that are related to personal or social standards and which lead to a wish to escape.61,62 Whether an individual experiences shame or demoralization as a response to an existential threat could be partly explained by culture.63 It is recognized that culture plays a large part in how illness and death are experienced.64 Thus, an individual from a collectivist culture may respond to news of ill health with shame, while an individual from an individualistic culture (eg, Australia) may respond by becoming demoralized. Such speculation requires further research.
Demoralization: Future Research and Clinical Needs Measuring Demoralization There are a number of assessment instruments designed to measure demoralization. The availability of a psychometrically sound measure of demoralization is essential to assist in the accurate diagnosis of this condition and inform treatment.2,29
Nonspecific Measures of Demoralization Psychiatric epidemiology research interview. The PERI, as discussed previously in the ‘‘History of Demoralization,’’ was based on the theoretical orientation that Demoralization was a nonspecific form of psychological distress.33 The PERI consists of 25 subscales, with 8 of the scales designed to capture nonspecific distress. The 8 scales combine to a total of 41 items, measured on a 5-point Likert-type scale. Given the latest conceptualization of demoralization is focused on a loss of meaning and hope, the PERI has not been used to measure demoralization in recent research. Demoralization Scale of the Restructured Clinical Scales of the Minnesota Multiphasic Personality Inventory—Second Edition. The Minnesota Multiphasic Personality Inventory—second edition (MMPI-2) contains a 24-item Demoralization Scale (DS), which measures a general sense of well-being, for instance, the expression of life satisfaction or dissatisfaction.65 This DS is one of the Restructured Clinical Scales within the MMPI-2, which is designed to differentiate psychological phenomena from valid somatic symptoms.65 Generally, a psychologist administers the MMPI-2 with a fee included for administration and interpretation.65 The MMPI-2 operationalization of
demoralization is broad, similar to the PERI, and is thus not discussed further here.
Diagnostic Criteria for Psychosomatic Research The DCPR was designed in an attempt to measure psychological distress that often presents in individuals with somatic illnesses.37 The DCPR is a structured interview comprising 58 questions that can be answered with a yes/no response. The DCPR measures 12 syndromes, one of which is demoralization. There are 5 items that assess demoralization. The conceptualization of demoralization according to the DCPR was outlined earlier in Definitions of Demoralization. Although this conceptualization of demoralization differs from the one proposed by Kissane, Clarke, and Street in that it is based on the theoretical orientation that medical illness develops as a result of demoralization—the understanding that there is a breakdown in coping as a result of a stressor is much the same.1 In our recent systematic review,5 rates of demoralization in patients with cancer and progressive diseases measured with the DCPR were reported to range between 20.6% and 33.3%.
Demoralization Scale Kissane and colleagues designed a 24-item self-report measure of demoralization from a pool of 32 items derived from clinical observation.66 In the DS, a 5-point Likert-type scale is used to measure how strongly the respondent agrees with each of the items. These researchers designed the DS in an attempt to validate the existence of demoralization and assist treatment. The questionnaire was initially validated with 100 patients with advanced cancer and its factor structure involved 5 facets, loss of meaning in life, dysphoria, disheartenment, helplessness, and sense of failure. Since the original validation study was published, 4 additional validation studies have been published,67-70 and the DS has been translated into several languages: Dutch, German, Hungarian, Italian, Lithuanian Mandarin, Portuguese, and Spanish. Overall, the DS has adequate psychometric properties, although confirmatory factor analysis has been recommended and test–retest reliability has yet to be examined.66-70 The establishment of divergent validity has also remained an issue, as there is a high level of convergence between depression and demoralization. As mentioned in the introduction section of this article, rates of severe demoralization range from 13% to 18% in patients with cancer or progressive disease.5 It has been associated with factors such as younger age, female sex, social isolation, physical symptom burden, depression, and anxiety,5 which aligns with Frank and de Figueiredo’s earlier hypotheses.32
Coding Demoralization Syndrome Including demoralization in a formal psychiatric diagnostic model such as the DSM is dependent on a clearly accepted definition of demoralization and field trials that empirically validate the syndrome across clinical settings and cultures.41,66
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6 Demoralization is currently not acknowledged in any psychiatric classification system. More field work is clearly needed to delineate the boundaries of the diagnosis. Leading researchers have debated where demoralization may best fit in a formal diagnostic system.29,30,41 Confusion has arisen due to the specification that a dual diagnosis of major depression and demoralization is not permitted with use of the DCPR.37 Similarly, the definition of demoralization proposed by Kissane, Clarke, and Street indicates that the presence of a Major Depressive Episode trumps demoralization.1 Yet, these approaches do not account for the clinical observation and extensive empirical evidence demonstrating that depression and demoralization can coexist.42,66-69,71 Clarke and Kissane argued demoralization cannot be viewed as nonpathological and a typical response to adversity,41 as suggested by Slavney,3 as doing so would result in the importance of the condition being minimized. With this considered, Clarke and Kissane suggested that demoralization should be viewed as a primary diagnosis.41 They focused on arguing that severe demoralization is more profound than DSM Adjustment Disorders. These authors recommended that a diagnostic category of demoralization syndrome aids diagnosis and guides treatment more than the adjustment category. Moreover, a diagnosis of demoralization syndrome should be permitted in conjunction with other diagnoses such as depression and schizophrenia.41 Although we agree with Clarke and Kissane, in this article, we recognize that mild states of demoralization do meet criteria for Adjustment Disorders.
Treatment Options for Demoralization Clarke and Kissane contended that mild demoralization—a state of disheartenment and despondency—is a condition that can be helped by simply listening to the patient’s story and providing them with an opportunity to refocus their coping efforts.41 When specialist skills are required for individuals with severe demoralization, however, they recommended therapeutic skills that are reflective of standard psychotherapy techniques. Specifically, techniques from a cognitive behavioral perspective can be employed in the context of exploring global meaning, roles, and purpose. As noted in ‘‘Current Definitions of Demoralization,’’ the development of demoralization likely occurs in response to the assumptive world (our core beliefs or schemas)11 being challenged by the stress of the illness. Cognitive behavioral therapy is an ideal mode of therapy for exploration and deepening understanding of this process.41 Finally, Clarke and Kissane stressed the importance of establishing strong rapport with the patient and ensuring an empathic and attentive approach. Since then, brief psychotherapy at the bedside has been proposed by Griffith and Gaby72 who provided a number of questioning techniques to work through the existential concerns that arise from demoralization. They suggest identifying which existential themes are most prominent and tailoring questioning and consequent intervention in response to the identified existential themes. For instance, they suggested if
the existential posture prominent is one of purpose versus meaninglessness, it might be appropriate to ask, ‘‘What keeps you going on difficult days?’’ or ‘‘What do you hope to contribute in the time you have remaining?’’72(113) Nonetheless, these authors make the crucial point of recognizing the need ‘‘to suffer with’’ the patient and not undermine the insolvability of their condition prior to posing resilience building questions.72(115) More recently, there have been trials of brief interventions such as the Individual Meaning-Centred Psychotherapy and Meaning-Centred Group Psychotherapy, which focus on encouraging spiritual well-being and a sense of meaning and purpose.73,74 The idea of group work to encourage support among the terminally ill patients is not a new discovery. Indeed, Spiegel, Bloom, and Yalom trialled weekly supportive expressive group meetings in the 1980s for women with metastatic cancer and found significant effects for the treatment group, including lowered mood disturbance, reduced maladaptive coping strategies, and decreased phobic tendencies.75,76 Similarly, the work of Lethborg and colleagues has focused on exploring the lived experience of meaning in advanced cancer.9,10 These authors have consequently developed Meaning and Purpose (MaP) therapy for patients with advanced cancer, a 4-session manualized individual therapy that refocuses the patient’s attention from suffering to what is meaningful in life.77 Meaning-centred therapy has also been the focus of Fillion’s work with nurses, helping them to focus on the meaning of their care provision to protect against burnout.78,79 Overall, whether or not recognition of demoralization guides effective treatment in palliative care will be an important harbinger for the validity and usefulness of the construct.41 Measurement tools such as the DS or DCPR will promote this recognition as they can be used as pre/postmeasures of demoralization, further supporting their usefulness as well as providing data for the appropriateness of such meaning-based interventions.
Conclusion and Clinical Considerations The dominant conceptualization of demoralization is that it is a form of psychological distress that presents due to a breakdown in coping and features hopelessness, helplessness, and a loss of meaning and purpose.1 It is recognized that although demoralization is a term that has been discussed only in the last half century, it is a condition that has been present throughout human history.1 Demoralization syndrome has been commonly found among patients facing the end of life, where existential concerns come into sharp focus.41 Research in this area has evolved with the development of assessment measures that can be used to capture the condition and inform treatment.37,66 Such measures could be employed in palliative care practice as an adjunct screening tool in the assessment of emotional status and coping efforts. A biopsychosocial approach should be adopted when working with the patient, considering such factors as age, gender, social support, and
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physical and psychological symptoms, as potential contributors to demoralization. Further, considering demoralization as a diagnosis instead of (or sometimes alongside) depression can be achieved by looking for subtleties in the patient’s experience of pleasure and report of their morale. Where there appears to be mild loss of morale, the clinician should attempt to instigate conversation and provide a humanistic approach in their care. Where severe demoralization presents, providing a meaningbased intervention is suggested through specialized care. Overall, recognition of demoralization as a psychiatric syndrome will assist in formalizing this process, which ultimately has the potential to improve the quality of life of the terminally ill patient—a clinical necessity in palliative care. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
References 1. Kissane DW, Clarke DM, Street AF. Demoralization syndrome: a relevant psychiatric diagnosis for palliative care. J Palliat Care. 2001;17(1):12-21. 2. Angelino AF, Treisman GJ. Major depression and demoralization in cancer patients: diagnostic and treatment considerations. Support Care Cancer. 2001;9(5):344. doi:10.1007/ s005200000195. 3. Slavney PR. Diagnosing demoralization in consultation psychiatry. Psychosomatics. 1999;40(4):325-329. 4. de Figueiredo JM. Advances in the study of demoralization: an overview. Eur J Psychiatry. 2013;27(1):5-6. doi:http://dx.doi. org/10.4321/S0213-61632013000100001. 5. Robinson S, Kissane DW, Brooker J, Burney S. A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: a decade of research. J Pain Symptom Manage. In press. doi:10.1016/j.jpainsymman.2014.07.008. 6. Yalom ID. Existential Psychotherapy. New York, NY: Yalom Family Trust; 1980. 7. Yalom ID. The Yalom Reader: Selections From the Work of a Master Therapist and Storyteller. New York, NY: Basic Books; 1998. 8. Frankl VE. Man’s Search for Meaning. New York, NY: Simon and Schuster; 1985. 9. Lethborg C, Aranda S, Bloch S, Kissane D. The role of meaning in advanced cancer—integrating the constructs of assumptive world, sense of coherence and meaning-based coping. J Psychosoc Oncol. 2006;24(1):27-42. 10. Lethborg C, Aranda S, Cox S, Kissane D. To what extent does meaning mediate adaptation to cancer? The relationship between physical suffering, meaning in life, and connection to others in adjustment to cancer. Palliat Support Care. 2007;5(04): 377-388. doi:10.1017/S1478951507000570. 11. Frank JD. Persuasion and Healing: A Comparative Study of Psychotherapy. 2nd ed. Baltimore, MD: JHU Press; 1993.
12. Janoff-Bulman R. Assumptive worlds and the stress of traumatic events: applications of the schema construct. Soc Cogn. 1989;7(2):113-136. 13. Lazarus RS, Folkman S. Stress, Appraisal, and Coping. New York, NY: Springer Publishing Company; 1984. 14. Folkman S. Positive psychological states and coping with severe stress. Soc Sci Med. 1997;45(8):1207-1221. doi:10.1016/S02779536(97)00040-3. 15. Frank JD. Psychotherapy: the restoration of morale. Am J Psychiatry. 1974;131(3):271-274. 16. Finlay-Jones R. Disgust with life in general. Aust N Z J Psychiatry. 1983;17(2):149-152. 17. Bartlett SJ. Acedia: the etiology of work-engendered depression. New Ideas Psychol. 1990;8(3):389-396. 18. Altschule MD. Acedia: its evolution from deadly sin to psychiatric syndrome. Br J Psychiatry. 1965;111(471):117-119. 19. Brown TM. The growth of george engel’s biopsychosocial model. Corner Society Presentation. Web site. http://human-nature.com/ free-associations/engel1.html. Published May 2000. Accessed September 5, 2013. 20. Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196(4286):129-136. 21. Engel GL. A psychological setting of somatic disease: the ‘giving up-given up’ complex. Proc R Soc Med. 1967;60(6):553. 22. Engel GL. A life setting conducive to illness. the giving-up— given-up complex. Bull Menninger Clin. 1968;32(6):355-365. 23. Gruenberg M. The social breakdown syndrome-some origins. Amer J Psychiaty. 1967;123(12);1481-1489. 24. Schmale AH. Giving up as a final common pathway to changes in health. Adv Psychosom Med. 1972;8:20-40. 25. Seligman ME. Learned helplessness. Annu Rev Med. 1971;23: 407-412. 26. Seligman ME. Helplessness: On Depression, Development, and Death. New York, NY: WH Freeman/Times Books/Henry Holt & Co; 1975. 27. Frank JD. The role of hope in psychotherapy. Int J Psychiatry. 1968;5(5):383-395. 28. de Figueiredo JM, Frank JD. Subjective incompetence, the clinical hallmark of demoralization. Compr Psychiatry. 1982; 23(4):353-363. doi:10.1016/0010-440X(82)90085-2. 29. de Figueiredo JM. Some issues in research on the epidemiology of demoralization. Compr Psychiatry. 1983;24(2):154. doi:10. 1016/0010-440X(83)90103-7. 30. de Figueiredo JM. Demoralization and psychotherapy: a tribute to jerome d. Frank, md, phd (1909–2005). Psychother Psychosom. 2007;76(3):129-133. doi:10.1159/000099839. 31. de Figueiredo JM. Depression and demoralization: phenomenologic differences and research perspectives. Compr Psychiatry. 1993;34(5):308-311. 32. Frank JD, Frank JB. Persuasion and Healing: A Comparative Study of Psychotherapy. Baltimore, MD: JHU Press; 1991. 33. Dohrenwend BP, Shrout PE, Egri G, Mendelsohn FS. Nonspecific psychological distress and other dimensions of psychopathology: measures for use in the general population. Arch Gen Psychiatry. 1980;37(11):1229.
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8 34. Kleinman A. Patients and Healers in the Context of Culture: An Exploration of the Borderland Between Anthropology, Medicine and Psychiatry. Berkeley, CA: University of California Pr; 1980. 35. Kleinman A. The Illness Narratives: Suffering, Healing and the Human Condition. New York, NY: Basic Books; 1988. 36. Connor MJ, Walton JA. Demoralization and remoralization: a review of these constructs in the healthcare literature. Nurs Inq. 2011;18(1):2-11. doi:10.1111/j.1440-1800.2010.00501.x. 37. Fava GA, Freyberger HJ, Bech P, et al. Diagnostic criteria for use in psychosomatic research. Psychother Psychosom. 1995;63(1): 1-8. doi:10.1159/000288931. 38. Tavakoli HR. A closer evaluation of current methods in psychiatric assessments: a challenge for the biopsychosocial model. Psychiatry (Edgmont). 2009;6(2):25. 39. Epstein RM, Borrell-Carrio F. The biopsychosocial model: exploring six impossible things. Fam Syst Health. 2005;23(4): 426. doi:10.1037/1091-7527.23.4.426. 40. Meissner WW. Psychoanalysis and the mind-body relation: psychosomatic perspectives. Bull Menninger Clin. 2006;70(4): 295-315. 41. Clarke DM, Kissane DW. Demoralization: its phenomenology and importance. Aust N Z J Psychiatry. 2002;36(6):733-742. doi:10.1046/j.1440-1614.2002.01086.x. 42. Kissane DW. The contribution of demoralization to end of life decisionmaking. Hastings Cent Rep. 2004;34(4):21-31. doi:10. 2307/3528690. 43. Kissane DW, Kelly BJ. Demoralisation, depression and desire for death: problems with the dutch guidelines for euthanasia of the mentally ill. Aust N Z J Psychiatry. 2000;34(2):325-333. doi:10. 1046/j.1440-1614.2000.00692.x. 44. Kissane DW. Euthanasia, dementia and ageing. Curr Opin Psychiatry. 1999;12(4):457-461. 45. Kissane DW. The challenge of informed consent. J Pain Symptom Manage. 2000;19(6):473-474. doi:10.1016/S08853924(00)00122-6. 46. Kissane DW. Demoralisation: its impact on informed consent and medical care. Med J Aust. 2001;175(10):537-539. 47. Beck AT, Kovacs M, Weissman A. Hopelessness and suicidal behavior. JAMA. 1975;234(11):1146-1149. 48. Wetzel RD. Hopelessness, depression, and suicide intent. Arch Gen Psychiatry. 1976;33(9):1069. 49. Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet. 1999;354(9181):816-819. 50. Kissane DW. Psychospiritual and existential distress. the challenge for palliative care. Aust Fam Physician. 2000;29(11): 1022-1025. 51. Sansone RA, Sansone LA. Demoralization in patients with medical illness. Psychiatry (Edgmont). 2010;7(8):42. 52. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders—Five. 5th ed. Washington, DC: American Psychiatric Publishing; 2013. 53. Kissane DW. Distress, demoralisation and depression in palliative care. Curr Ther (Seaforth). 2000;41(6):14-19.
54. Klein DF, Gittelman R, Quitkin F, Rifkin A. Diagnosis and Drug Treatment of Psychiatric Disorders: Adults and Children. Baltimore, MD: Williams & Wilkins Baltimore; 1980. 55. Dirckx JH. Stedman’s Concise Medical & Allied Health Dictionary. Baltimore, MD: Williams & Wilkins; 1997. 56. Wellen M. Differentiation between demoralization, grief, and anhedonic depression. Curr Psychiatry Rep. 2010;12(3): 229-233. 57. Deutsch H. Absence of grief. Psychoanal Q. 1937;6(1):12-22. 58. Jacobsen JC, Zhang B, Block SD, Maciejewski PK, Prigerson HG. Distinguishing symptoms of grief and depression in a cohort of advanced cancer patients. Death Stud. 2010;34(3):257-273. doi:10.1080/07481180903559303. 59. Prigerson HG, Shear MK, Jacobs SC, et al. Consensus criteria for traumatic grief. a preliminary empirical test. Br J Psychiatry. 1999;174(1):67-73. 60. Szanto K, Shear KM, Houck PR, et al. Indirect self-destructive behavior and overt suicidality in patients with complicated grief. J Clin Psychiatry. 2006;67(2):233-239. 61. Lewis HB. Shame and guilt in neurosis. Psychoanal Rev. 1971; 58(3):419-438. 62. Gilbert P, Andrews B. Shame: Interpersonal Behavior, Psychopathology, and Culture. New York, NY: Oxford University Press; 1998. 63. Okano K-I. Shame and social phobia: a transcultural viewpoint. Bull Menninger Clin. 1994;58(3):323-338. 64. Koenig BA, Gates-Williams J. Understanding cultural difference in caring for dying patients. West J Med. 1995;163(3): 244. 65. University of Minnesota Press. MMPI-2: Restructured Clinical (RC) Scales: FAQS. Minnesota: University of Minnesota Press; 2011. Web site. http://www.upress.umn.edu/test-division/mtdda/ mmpi-2-restructured-clinical-rc-scales-faqs. Accessed February 17, 2014. 66. Kissane DW, Wein S, Love A, Lee XQ, Kee PL, Clarke DM. The demoralization scale: a report of its development and preliminary validation. J Palliat Care. 2004;20(4):269-276. 67. Mullane M, Dooley B, Tiernan E, Bates U. Validation of the demoralization scale in an irish advanced cancer sample. Palliat Support Care. 2009;7(3):323-330. doi:10.1017/S1478951509990253. 68. Mehnert A, Vehling S, Hocker A, Lehmann C, Koch U. Demoralization and depression in patients with advanced cancer: validation of the german version of the demoralization scale. J Pain Symptom Manage. 2011;42(5):768-776. doi:10.1016/j.jpainsymman.2011.02.013. 69. Hung H, Chen H, Chang Y, et al. Evaluation of the reliability and validity of the mandarin version of demoralization scale for cancer patients. J Intern Med Taiwan. 2010;21:427-435. 70. Costantini A, Picardi A, Brunetti S, et al. Italian version of demoralization scale: a validation study. Riv Psichiatr. 2013; 48(3):234-239. ´ , Nagy L. Introduction of the demoralization 71. Hadnagy Z, Csiko´s A scale in hungary, a study on demoralization and depression among hospice patients. Orvosi Hetilap. 2012;153(19):737-743.
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72. Griffith JL, Gaby L. Brief psychotherapy at the bedside: countering demoralization from medical illness. Psychosomatics. 2005; 46(2):109-116. doi:10.1176/appi.psy.46.2.109. 73. Breitbart W, Poppito S, Rosenfeld B, et al. Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. J Clin Oncol. 2012;30(12): 1304-1309. doi:http://dx.doi.org/10.1200/JCO.2011.36.2517. 74. Breitbart W, Rosenfeld B, Gibson C, et al. Meaning-centered group psychotherapy for patients with advanced cancer: a pilot randomized controlled trial. Psychooncology. 2010;19(1):21-28. doi:10.1002/pon.1556. 75. Spiegel D, Bloom JR, Yalom I. Group support for patients with metastatic cancer: a randomized prospective outcome study. Arch Gen Psychiatry. 1981;38(5):527.
76. Spiegel D, Yalom I. A support group for dying patients. Int J Group Psychother. 1978;28(2):233-245. 77. Lethborg C, Schofield P, Kissane DW. The advanced cancer patient experience of undertaking meaning and purpose (MaP) therapy. Palliat Support Care. 2012;10(3):177-188. doi:http:// dx.doi.org/10.1017/S147895151100085X. 78. Fillion L, Dupais R, Tremblay I, De Grace G, Breitbart W. Enhancing meaning in palliative care practice: a meaning-centered intervention to promote job satisfaction. Palliat Support Care. 2006;4(4):333-344. doi:10.1017/S1478951506060445. 79. Fillion L, Duval S, Dumont S, et al. Impact of a meaning-centered intervention on job satisfaction and on quality of life among palliative care nurses. Psychooncology. 2009;18(12):1300-1310. doi:10.1002/pon.1513.
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A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care Sophie Robinson, David W. Kissane, Joanne Brooker and Susan Burney AM J HOSP PALLIAT CARE published online 7 October 2014 DOI: 10.1177/1049909114553461 The online version of this article can be found at: http://ajh.sagepub.com/content/early/2014/10/01/1049909114553461
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A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care
American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114553461 ajhpm.sagepub.com
Sophie Robinson, BPsych1,2,3, David W. Kissane, MD, MPM, FRANZCP, FAChPM1,2,3, Joanne Brooker, BSc, GradDipComp, GradDipPsych, PhD2,3, and Susan Burney, BA, GradDipCounsPsych, MHlthSc, FAPS PhD1,2,3
Abstract Demoralization has been the subject of discussion in relation to end-of-life care. It is characterized by hopelessness and helplessness due to a loss of purpose and meaning. The purpose of this review was to consolidate the conceptual understanding of demoralization and argue for its existence as a psychiatric syndrome. The history of the construct is explored, including the nature of existential distress and related psychological conditions that precipitate demoralization. Recent definitions of demoralization are described and differentiated from similar constructs. Future directions are highlighted, specifically in relation to the assessment, diagnosis, and treatment of demoralization in palliative care. Overall, demoralization is a clinically useful construct for those facing existential threat, guiding the clinician toward efforts to restore morale, meaning, and purpose. Keywords demoralization, depression, existential distress, end of life, loss of meaning, terminal, palliative care
A 74-year-old widower and retired gardener, ‘‘Joe’’ was afflicted with multiple squamous cell carcinomas of his head and neck, the result of prolonged sun exposure in years gone by. He had lost the greater part of his nose and both ears. He had enlarged neck nodes with facial palsy. Although provided with a facial prosthesis to cover his wounds, he was often too bothered to wear this. Highly embarrassed by his disfigurement, he withdrew socially only finding enjoyment when spending time with his family. Life had become boring otherwise. He declared, ‘‘What’s the point of going on? My life is meaningless now. I want to die.’’
This case illustration is a common clinical problem in the hospice setting, known as demoralization. As one expression of existential distress, demoralization is characterized by feelings of hopelessness and helplessness due to a loss of purpose and meaning in life.1 Demoralization has been advocated as a potential psychiatric syndrome in palliative care for over 2 decades as the conceptual framework for its existence has been debated.1-3 Although commonly experienced among terminally ill patients, demoralization has been researched in many settings including substance dependence and chronic medical illness.4 The rationale for its importance as a syndrome stems from the associated desire for hastened death that accompanies such feelings of hopelessness and meaninglessness, raising issues of competency in the context of rational or physician-assisted suicide.1 We have recently
published a systematic review of the concept of demoralization syndrome and reported a prevalence rate of 13% to 18% in patients with cancer and palliative care patients.5 The purpose of the current review was to provide a more conceptual understanding of demoralization by integrating past and prior literature on demoralization while also highlighting the key clinical implications that the recognition of demoralization has for palliative care. Specifically, the first aim was to provide a history of the conceptualization of demoralization. A second aim was to define demoralization and differentiate it from related constructs. A final aim was to discuss the future research and clinical needs for demoralization. Overall, adoption of demoralization as a psychiatric syndrome is suggested to ensure adequate care of the palliative care patient.
1
School of Psychological Sciences, Monash University, Clayton, Australia Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia 3 Cabrini Monash Psycho-oncology, Cabrini Health, Malvern, Australia 2
Corresponding Author: David W. Kissane, FRANZCP, MD, MPM, FAChPM, Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Level 3, P Block, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3186, Australia. Email: [email protected]
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The History of Demoralization Existential Distress and Meaning The prominent existential psychotherapist, Irvin Yalom, is central to the discussion on demoralization as a large focus of his work was related to existential distress.6 In Yalom’s text, Existential Psychotherapy, he defined existential psychotherapy as a therapy that is dynamic and focused on the distress that is grounded in the individual’s existence.6 Specifically, Yalom’s work explored the idea that conflict arose when the reality of existence was faced.7 Demoralization can be understood to result from this existential conflict—when a person lacks the resources to cope with such conflict. It was Yalom’s understanding that the benefit of therapy does not come from adherence to an ideological school but rather through exploring an individual’s existence, the relationship with the therapist, the contemplation of choice, and wondering about the meaning of life.6 Another relevant existential therapist and physician was Viktor Frankl who devoted his professional interest to questions of meaning.8 The meaning of life is a philosophical question regarding the significance and value found through an individual’s roles, accomplishments, and sources of fulfillment.9,10 Frankl hypothesized that meaning could be found within any life situation.8 As a survivor of the holocaust and a physician, Frankl argued that society has medicalized the spiritual aspect of the human being and pathologized the innate search for meaning. Frankl termed this search for meaning that makes humans unique as the will to meaning.8 He proposed that with finding meaning, facing any form of adversity was doable. Frankl was the founder of logotherapy, first termed in the 1920s, which was psychotherapy focused on the human spirit. His conceptualization of existential despair was that it is a state of meaninglessness. With further reference to meaning, the concept of the assumptive world is another important construct here. The assumptive world is defined as the unquestioned beliefs an individual holds about himself and the world.11,12 These established beliefs and ideas form the basis from which meaning in life is drawn.9 Without the assumptive world, it would appear that there is no reference point for the individual to draw between what is perceived as meaningful versus meaningless. In addition to meaning, an understanding of coping is also essential to this discussion. Susan Folkman devoted much time to understanding the process of coping.13 Lazarus and Folkman’s original theory of coping focused on studying processes that resulted in the reduction of an aversive state through emotion-based or problem-based responses.13 More recently, however, Folkman realized she had overlooked meaning-based coping in her original formulation.14 She discovered meaning-based coping during a longitudinal study of the partners of men with AIDS who were profoundly stressed from caregiving and bereavement. Folkman found that the caregivers were able to sustain joy and experience both positive and negative psychological states. Interestingly,
she found that this was common rather than just possible. Consequently, Folkman realized that reformulating the meaning of a situation can alter previously held beliefs and goals, potentially enhancing positive feelings during a difficult experience. Thus, she came to appreciate the meaning that caregivers derived from such loving care provision and subsequently theorized meaning-based coping. Having considered the importance of finding meaning through the work of Yalom, Frankl, and Folkman, let us now turn to states where meaning is lost.
Demoralization and Related Conditions Although the term demoralization as a psychological phenomena did not enter the psychiatric literature until the 1970s,15 a number of conditions proposed throughout history have described a similar presentation.1 For instance, as early as the fourth century, spiritual torpor or acedia was a comparable condition.1,16 Acedia is a motivational state, which refers to a loss of hope and feelings of dullness, despair, and meaninglessness.17,18 Writings on acedia originated from the Christian Church, in which the term was used to describe bored monks who had neglected their spirituality.16 Modern researchers have argued that acedia and demoralization were comparable on the basis of the similar loss of attention to what is meaningful about life.1,17 In addition, the giving up–given up complex, social breakdown syndrome, ‘‘giving up,’’ and learned helplessness all have a similar presentation to demoralization, given their focus on hopelessness.1 The giving up–given up complex among the medically ill patients was proposed by George Engel, a psychiatrist from Rochester, New York, who was a doyen of psychosomatic medicine and the father of consultation-liaison psychiatry.19,20 The giving up–given up complex was used to describe a psychological state characterized by hopelessness, helplessness, discouragement, and the perception of being unable to cope.21 When a patient gives up psychologically, their ability to cope with medical illness is considerably weakened.21,22 Similarly, the social breakdown syndrome among the mentally ill patients, proposed by Ernest Gruenberg—another psychiatrist from New York, occurred as a result of extended institutionalization in asylums and was characterized by the loss or deterioration of social and interpersonal skills.23 Likewise, ‘‘giving up’’ was proposed by Art Schmale, a colleague of Engel’s from Rochester,19 as an explanation for the development of physical illness due to the perception of helplessness or hopelessness, contributing to poor self-care.24 The concept of learned helplessness25,26 also has similarities to demoralization.1 Martin Seligman, a researcher from the University of Pennsylvania who worked under Aaron Beck and contributed enormously to self-help and positive psychology therapies, proposed the concept of learned helplessness.25 When events are uncontrollable, the psychological state of helplessness can develop when problem-based coping is
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ineffective.26 Learned helplessness was defined as a conditioned attributional state of perceived absence of control over a situation that could be overcome.25 Seligman argued that an individual deduces that behavior no longer influences outcomes when exposed to uncontrollable aversive events.25 Learned helplessness is therefore a situation in which an individual stops instigating action to impact the outcome. While these terms were being discussed in the literature, Jerome Frank, a Boston psychotherapist who described the common elements to all psychotherapies, proposed the existence of demoralization in the psychotherapeutic setting.15 Frank viewed demoralization as a psychological state that eventuated from an individual experiencing an inability to cope with internal or external stressors that were generally considered as easy to manage. The essence of Frank’s work was the importance of hope in the therapeutic process, highlighting how humans have the ability to perceive the future and how a negative perception can strongly affect the human psyche.27 He saw the loss of morale as central to all mental illnesses.11 According to Frank, the key characteristics of demoralization are ‘‘feelings of impotence, isolation, and despair.’’15(p271) He concluded that when demoralized, selfesteem suffers and rejection is felt due to failing to meet the expectations of others.11,15 Alienation can also be common if meaning is derived from social connections.15 Indeed, such features of isolation and social withdrawal were prominent for Joe in the opening case illustration. Frank contended that demoralization was the motivating factor leading individuals to seek psychotherapy and that people with mental illnesses who do not seek treatment are not demoralized,11,15 a phenomenon he termed the Demoralization Hypothesis.28,29 The majority of his work, however, was based on clinical observations rather than empirical studies.30 Frank’s student, John de Figueiredo, now a clinical professor of psychiatry from Yale University, sustained a lifelong focus on demoralization.28-31 de Figueiredo viewed demoralization as a major public health issue and proposed that the condition consisted of two components, distress and subjective incompetence.28 Distress was conceptualized as any form of psychological suffering such as anxiety, depression, sadness, and anger. Subjective incompetence was defined as a state that resulted from the self-perception of being incapable of appropriate action in demanding circumstances. Yet, it is only when distress and subjective incompetence are experienced concurrently that demoralization presents.28 Finally, de Figueiredo and Frank specified predictors of demoralization: low self-esteem, poor social connections, and general constitutional vulnerability.32 Dohrenwend, Shrout, Egri, and Mendelsohn termed demoralization as a nonspecific psychological distress or a common distress syndrome seen in their studies of people within the community.33 In their theoretical conceptualization of demoralization, these authors proposed a means for measuring this construct using psychiatric screening scales as they regarded demoralization as a single common underlying dimension of psychological distress.30 Dohrenwend and colleagues
developed the psychiatric epidemiology research interview (PERI) as a measurement of demoralization.33 Given its length, however, this tool has scarcely been used to measure demoralization in recent studies. In addition to the discussed researchers, anthropologist and psychiatrist, Arthur Kleinman contributed to the literature on demoralization with his work on illness narratives.34-36 Kleinman argued that demoralization occurred when (1) pharmacological treatment failed to improve symptoms of depression, (2) the symptoms increased in response to particular forms of orthodox medicine, and/or (3) when physical symptoms did not appear to have a known physiological cause.35 Kleinman strongly held that demoralization existed as existential human distress that could be understood by paying close attention to the perceptions of the patient.36 The later work of Frank and Frank articulated similar views to Kleinman.32,36 These researchers believed that it was important to listen closely to the client’s story to understand why some people cope and others do not (ie, constitutional vulnerabilities). Kleinman contended that without paying attention to existential distress, reports of physical symptoms that take origin in the psyche will remain misunderstood.35 All these researchers were influential contributors to the early literature on demoralization. During the late 20th century, several aspects of the construct evolved and established the basis for future studies.36
Current Definitions of Demoralization In later years, an international consortium of researchers, the Bologna Group, investigated demoralization and its prevalence among groups with different medical illnesses.37 These researchers defined demoralization with the Diagnostic Criteria for Psychosomatic Research (DCPR), which includes the following 3 diagnostic criteria: 1.
2. 3.
The patient feels as if they have failed to meet the expectations set by themselves or those around them or experiences a general inability to cope with demands. This results in feelings of helplessness, hopelessness, and a desire to give up. The feelings are prolonged, generalized, and are present for at least 1 month. The feelings directly precede the development of a medical disorder or strengthen its symptoms.37
The Bologna group sustained a long held psychosomatic tradition in postulating that helplessness, hopelessness, and the tendency to give up preceded the development of the medical illness.37 Through clinical observation, these researchers conceptualized demoralization as a psychological state akin to the giving up–given up syndrome. Today, there is less support for this psyche to soma etiological connection.38-40 Rather, the patterns of thinking and behavior may have been long held cognitive schemata, or aspects of the person’s assumptive world, that become activated by the adversity of
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4 illness.40 The predicament of illness and its treatment then likely aggravate these cognitions and they strengthen the development of demoralization. With little focus on the psychosomatic connection, the most recent formulation of demoralization was proposed by Australian psychiatrists Kissane and Clarke.1,41 Stemming from a particular interest in suicide in medically ill patients and physician-assisted suicide, Kissane focused on demoralization as an explanatory source of suicidal thinking in palliative care.42-46 Such research involved advocacy for demoralization as a syndrome, to elucidate its clinical importance as a treatable condition and better focus potential therapeutic interventions.1 Kissane and colleagues considered demoralization as an abnormal response characterized by the key features of loss of meaning and hope. In addition, they have concluded that existential distress is present in demoralization and a desire to die can develop. Indeed, hopelessness has long been recognized as a key predictor of suicidal behavior and was shown to be a stronger predictor of suicide than depression.47,48 Importantly, however, in palliative care patients nearing death, the will to live has been found to vary in response to fluctuations in depression, anxiety, shortness of breath, and sense of well-being.49 This current definition of demoralization, which has evolved from those previously described, is more specific and more readily differentiated from depression. The key focus in this particular conceptualization is on a loss of meaning and purpose. Kissane proposed a set of diagnostic criteria for diagnosing demoralization syndrome.50 It includes: 1. the experience of emotional distress such as hopelessness and having meaning and purpose in life lost; 2. attitudes of helplessness, failure, pessimism, and lack of a worthwhile future; 3. reduced coping to respond differently; 4. social isolation and deficiencies in social support; 5. persistence of the above-mentioned phenomena across 2 or more weeks; and 6. features of major depression have not superseded as the primary disorder. Overall, both the Italian and the Australian definitions of demoralization with set criteria are a step forward in psychiatric assessment. Such assessment of demoralization is important as it helps conceptualize the patient’s symptomatology and aids in the formulation of treatment.2,29 For Joe in the opening case illustration, providing him with a diagnosis of demoralization syndrome would assist his care team in guiding treatment as well as provide a context for both Joe and his family to help in understanding his experience. Nonetheless, those defining demoralization as an abnormal response worthy of a formal diagnosis and clinical attention have faced challenges. Indeed, Sansone and Sansone51 highlighted that in medically ill patients, demoralization may be to some degree normative, given the level of potential psychosocial and physical shortcomings medical problems can create.51 Other
academics have described demoralization as an Adjustment Disorder (defined in the Diagnostic and Statistical Manual of Mental Disorders [DSM])52 or a normal response to the grief stemming from a loss.2,3 These competing conceptualizations may generate confusion and contribute to the difficulty in establishing the credibility of demoralization as a psychiatric syndrome worthy of coding in formal diagnostic systems. Nonetheless, Sansone and Sansone recognized that there must be a dimensional nature to these symptoms, ranging from what would be a normal response to one that was leading to impairment.51 In fact, Kissane had always conceptualized the loss of morale on a spectrum, recognizing that this experience constitutes a range of mental states.42 Specifically, from a mild loss of confidence—disheartenment, to the beginning of losing hope and purpose—despondency, to a state where all hope is lost—despair, through to severe demoralization where meaning and purpose are lost. It is recognized that a moderate level of demoralization may be on a par with DSM Adjustment Disorder; however, psychiatric involvement is worthwhile at the more extreme end of this spectrum, where a loss of meaning, purpose, and hope may contribute to the development of suicidal ideations.53
Differentiating Demoralization From Related Constructs The earlier work of de Figueiredo explored how demoralization differed from depression with reference to motivation.31 Describing motivation as a concept consisting of both magnitude and direction, he argued that in demoralization, subjective incompetence was similar to a loss of direction in motivation, while distress contributed to the change in the magnitude of motivation.30,31 With this considered, an individual who is demoralized even when they have sufficient magnitude of motivation may experience a sense of inadequacy and uncertainty about the future. In depression, however, it is a decrease in motivation that results in inhibited action, even when the direction of action is known. Another key distinction between depression and demoralization is in the experience of pleasure. Depression results in a loss of both anticipatory and consummatory pleasure; however, the experience of demoralization only results in a loss of anticipatory pleasure.54 Pleasure in the present moment is still possible in individuals who are demoralized but not depressed. Indeed in the case of Joe, he was able to feel enjoyment when spending time with his family. Grief has also been discussed as a similar condition to demoralization. Grief, however, is a time-limited emotional reaction to loss,55 generally viewed as a healthy reaction.56 Indeed, as early as 1937, mourning was described as a normal coping process.57 Nonetheless, it is similar to mild forms of disheartenment in that the individual may experience disillusionment such as mild loss of meaning58 and can appreciate that this stems from an external stressor.56 Yet again, grief is different from demoralization, which is related to dysphoria and bitterness about illness, whereas grief is about feelings of distress, shock, and numbness at change and loss of health
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and the yearning for health and well-being.56,58 At the more extreme intensity of grief, where an individual may experience what is termed complicated, prolonged, or traumatic grief, these conditions can become more akin to demoralization. This is because both experiences are characterized by distorted thinking patterns and behavior that is self-destructive.59,60 Pathological grief can be differentiated from demoralization, however, as it originates from different circumstances, as described previously.56 Another potentially overlapping yet different psychological response to demoralization is shame. Shame is an affective state characterized by the experience of failure and feelings of responsibility for the failure that are related to personal or social standards and which lead to a wish to escape.61,62 Whether an individual experiences shame or demoralization as a response to an existential threat could be partly explained by culture.63 It is recognized that culture plays a large part in how illness and death are experienced.64 Thus, an individual from a collectivist culture may respond to news of ill health with shame, while an individual from an individualistic culture (eg, Australia) may respond by becoming demoralized. Such speculation requires further research.
Demoralization: Future Research and Clinical Needs Measuring Demoralization There are a number of assessment instruments designed to measure demoralization. The availability of a psychometrically sound measure of demoralization is essential to assist in the accurate diagnosis of this condition and inform treatment.2,29
Nonspecific Measures of Demoralization Psychiatric epidemiology research interview. The PERI, as discussed previously in the ‘‘History of Demoralization,’’ was based on the theoretical orientation that Demoralization was a nonspecific form of psychological distress.33 The PERI consists of 25 subscales, with 8 of the scales designed to capture nonspecific distress. The 8 scales combine to a total of 41 items, measured on a 5-point Likert-type scale. Given the latest conceptualization of demoralization is focused on a loss of meaning and hope, the PERI has not been used to measure demoralization in recent research. Demoralization Scale of the Restructured Clinical Scales of the Minnesota Multiphasic Personality Inventory—Second Edition. The Minnesota Multiphasic Personality Inventory—second edition (MMPI-2) contains a 24-item Demoralization Scale (DS), which measures a general sense of well-being, for instance, the expression of life satisfaction or dissatisfaction.65 This DS is one of the Restructured Clinical Scales within the MMPI-2, which is designed to differentiate psychological phenomena from valid somatic symptoms.65 Generally, a psychologist administers the MMPI-2 with a fee included for administration and interpretation.65 The MMPI-2 operationalization of
demoralization is broad, similar to the PERI, and is thus not discussed further here.
Diagnostic Criteria for Psychosomatic Research The DCPR was designed in an attempt to measure psychological distress that often presents in individuals with somatic illnesses.37 The DCPR is a structured interview comprising 58 questions that can be answered with a yes/no response. The DCPR measures 12 syndromes, one of which is demoralization. There are 5 items that assess demoralization. The conceptualization of demoralization according to the DCPR was outlined earlier in Definitions of Demoralization. Although this conceptualization of demoralization differs from the one proposed by Kissane, Clarke, and Street in that it is based on the theoretical orientation that medical illness develops as a result of demoralization—the understanding that there is a breakdown in coping as a result of a stressor is much the same.1 In our recent systematic review,5 rates of demoralization in patients with cancer and progressive diseases measured with the DCPR were reported to range between 20.6% and 33.3%.
Demoralization Scale Kissane and colleagues designed a 24-item self-report measure of demoralization from a pool of 32 items derived from clinical observation.66 In the DS, a 5-point Likert-type scale is used to measure how strongly the respondent agrees with each of the items. These researchers designed the DS in an attempt to validate the existence of demoralization and assist treatment. The questionnaire was initially validated with 100 patients with advanced cancer and its factor structure involved 5 facets, loss of meaning in life, dysphoria, disheartenment, helplessness, and sense of failure. Since the original validation study was published, 4 additional validation studies have been published,67-70 and the DS has been translated into several languages: Dutch, German, Hungarian, Italian, Lithuanian Mandarin, Portuguese, and Spanish. Overall, the DS has adequate psychometric properties, although confirmatory factor analysis has been recommended and test–retest reliability has yet to be examined.66-70 The establishment of divergent validity has also remained an issue, as there is a high level of convergence between depression and demoralization. As mentioned in the introduction section of this article, rates of severe demoralization range from 13% to 18% in patients with cancer or progressive disease.5 It has been associated with factors such as younger age, female sex, social isolation, physical symptom burden, depression, and anxiety,5 which aligns with Frank and de Figueiredo’s earlier hypotheses.32
Coding Demoralization Syndrome Including demoralization in a formal psychiatric diagnostic model such as the DSM is dependent on a clearly accepted definition of demoralization and field trials that empirically validate the syndrome across clinical settings and cultures.41,66
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6 Demoralization is currently not acknowledged in any psychiatric classification system. More field work is clearly needed to delineate the boundaries of the diagnosis. Leading researchers have debated where demoralization may best fit in a formal diagnostic system.29,30,41 Confusion has arisen due to the specification that a dual diagnosis of major depression and demoralization is not permitted with use of the DCPR.37 Similarly, the definition of demoralization proposed by Kissane, Clarke, and Street indicates that the presence of a Major Depressive Episode trumps demoralization.1 Yet, these approaches do not account for the clinical observation and extensive empirical evidence demonstrating that depression and demoralization can coexist.42,66-69,71 Clarke and Kissane argued demoralization cannot be viewed as nonpathological and a typical response to adversity,41 as suggested by Slavney,3 as doing so would result in the importance of the condition being minimized. With this considered, Clarke and Kissane suggested that demoralization should be viewed as a primary diagnosis.41 They focused on arguing that severe demoralization is more profound than DSM Adjustment Disorders. These authors recommended that a diagnostic category of demoralization syndrome aids diagnosis and guides treatment more than the adjustment category. Moreover, a diagnosis of demoralization syndrome should be permitted in conjunction with other diagnoses such as depression and schizophrenia.41 Although we agree with Clarke and Kissane, in this article, we recognize that mild states of demoralization do meet criteria for Adjustment Disorders.
Treatment Options for Demoralization Clarke and Kissane contended that mild demoralization—a state of disheartenment and despondency—is a condition that can be helped by simply listening to the patient’s story and providing them with an opportunity to refocus their coping efforts.41 When specialist skills are required for individuals with severe demoralization, however, they recommended therapeutic skills that are reflective of standard psychotherapy techniques. Specifically, techniques from a cognitive behavioral perspective can be employed in the context of exploring global meaning, roles, and purpose. As noted in ‘‘Current Definitions of Demoralization,’’ the development of demoralization likely occurs in response to the assumptive world (our core beliefs or schemas)11 being challenged by the stress of the illness. Cognitive behavioral therapy is an ideal mode of therapy for exploration and deepening understanding of this process.41 Finally, Clarke and Kissane stressed the importance of establishing strong rapport with the patient and ensuring an empathic and attentive approach. Since then, brief psychotherapy at the bedside has been proposed by Griffith and Gaby72 who provided a number of questioning techniques to work through the existential concerns that arise from demoralization. They suggest identifying which existential themes are most prominent and tailoring questioning and consequent intervention in response to the identified existential themes. For instance, they suggested if
the existential posture prominent is one of purpose versus meaninglessness, it might be appropriate to ask, ‘‘What keeps you going on difficult days?’’ or ‘‘What do you hope to contribute in the time you have remaining?’’72(113) Nonetheless, these authors make the crucial point of recognizing the need ‘‘to suffer with’’ the patient and not undermine the insolvability of their condition prior to posing resilience building questions.72(115) More recently, there have been trials of brief interventions such as the Individual Meaning-Centred Psychotherapy and Meaning-Centred Group Psychotherapy, which focus on encouraging spiritual well-being and a sense of meaning and purpose.73,74 The idea of group work to encourage support among the terminally ill patients is not a new discovery. Indeed, Spiegel, Bloom, and Yalom trialled weekly supportive expressive group meetings in the 1980s for women with metastatic cancer and found significant effects for the treatment group, including lowered mood disturbance, reduced maladaptive coping strategies, and decreased phobic tendencies.75,76 Similarly, the work of Lethborg and colleagues has focused on exploring the lived experience of meaning in advanced cancer.9,10 These authors have consequently developed Meaning and Purpose (MaP) therapy for patients with advanced cancer, a 4-session manualized individual therapy that refocuses the patient’s attention from suffering to what is meaningful in life.77 Meaning-centred therapy has also been the focus of Fillion’s work with nurses, helping them to focus on the meaning of their care provision to protect against burnout.78,79 Overall, whether or not recognition of demoralization guides effective treatment in palliative care will be an important harbinger for the validity and usefulness of the construct.41 Measurement tools such as the DS or DCPR will promote this recognition as they can be used as pre/postmeasures of demoralization, further supporting their usefulness as well as providing data for the appropriateness of such meaning-based interventions.
Conclusion and Clinical Considerations The dominant conceptualization of demoralization is that it is a form of psychological distress that presents due to a breakdown in coping and features hopelessness, helplessness, and a loss of meaning and purpose.1 It is recognized that although demoralization is a term that has been discussed only in the last half century, it is a condition that has been present throughout human history.1 Demoralization syndrome has been commonly found among patients facing the end of life, where existential concerns come into sharp focus.41 Research in this area has evolved with the development of assessment measures that can be used to capture the condition and inform treatment.37,66 Such measures could be employed in palliative care practice as an adjunct screening tool in the assessment of emotional status and coping efforts. A biopsychosocial approach should be adopted when working with the patient, considering such factors as age, gender, social support, and
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physical and psychological symptoms, as potential contributors to demoralization. Further, considering demoralization as a diagnosis instead of (or sometimes alongside) depression can be achieved by looking for subtleties in the patient’s experience of pleasure and report of their morale. Where there appears to be mild loss of morale, the clinician should attempt to instigate conversation and provide a humanistic approach in their care. Where severe demoralization presents, providing a meaningbased intervention is suggested through specialized care. Overall, recognition of demoralization as a psychiatric syndrome will assist in formalizing this process, which ultimately has the potential to improve the quality of life of the terminally ill patient—a clinical necessity in palliative care. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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76. Spiegel D, Yalom I. A support group for dying patients. Int J Group Psychother. 1978;28(2):233-245. 77. Lethborg C, Schofield P, Kissane DW. The advanced cancer patient experience of undertaking meaning and purpose (MaP) therapy. Palliat Support Care. 2012;10(3):177-188. doi:http:// dx.doi.org/10.1017/S147895151100085X. 78. Fillion L, Dupais R, Tremblay I, De Grace G, Breitbart W. Enhancing meaning in palliative care practice: a meaning-centered intervention to promote job satisfaction. Palliat Support Care. 2006;4(4):333-344. doi:10.1017/S1478951506060445. 79. Fillion L, Duval S, Dumont S, et al. Impact of a meaning-centered intervention on job satisfaction and on quality of life among palliative care nurses. Psychooncology. 2009;18(12):1300-1310. doi:10.1002/pon.1513.
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