Do you ever hear a medical term (e.g., demoralization) and wonder why it wasn't discussed in medical school? Do you ever wonder whether some words or concepts mean the same thing to all practitioners? If you have, then the following case vignette should provide the forum to discuss the evolution of some terms and help you decide how to apply them.

Mr. A, a 74-year-old man with end-stage colorectal cancer, was admitted to the hospital to rule out colonic obstruction. Review of systems revealed poorly controlled low back pain (that persisted throughout the day), poor sleep (which he attributed to pain), and several months of impaired concentration, anorexia, and significant weight loss (that had been attributed to cancer).

Mr. A's hospital course was marked by frustration over a delay in his colonoscopy (caused by his oncologist's out-of-town trip), by persistent pain, and by alternating constipation and diarrhea.

Both the palliative care and psychiatric services were consulted to help manage his pain and to evaluate his cognitive difficulties. Mr. A's back pain (deemed a consequence of a metastatic lesion at L3) was treated with escalating doses of controlled-release oxycodone and as-needed doses of short-acting oxycodone. His psychiatric history was unremarkable. On mental status examination, Mr. A was awake and amiable, but uncomfortable; he denied feeling depressed or guilty. However, he said that he no longer enjoyed his hobbies or spending time with family or friends.

As his hospital stay progressed, he appeared more withdrawn and became less hopeful that his pain, his difficulty maintaining attention, and his bowel problems would resolve. At one visit, he became extremely frustrated, and he complained about the food, his rate of recovery, the delays in testing, and his difficulty walking to the bathroom. When asked about the extent of his frustration, he said that he had been thinking about “smashing his head against the wall.“

Mr. A's medical team was uncertain about his diagnosis. They considered an agitated depression and wondered if external factors (e.g., his difficult hospitalization and his poorly controlled pain) adversely affected his mood.

However, in 1975, Schildkraut and Klein³ defined demoralization as a state separate from depression. Whereas patients with depression experienced anhedonia, patients with demoralization lost their sense of efficacy. In the 1980s and 1990s, Frank and De Figueiredo further refined the meaning of demoralization.⁴ The term demoralization remained distinct from depression and was characterized by 2 states: distress and a sense of incompetence that results from an uncertainty about which direction to take. Individuals with depression and those with anhedonia cannot act (even if they know the proper direction to take).

Recent debates about the definition of demoralization focus on its place in the DSM. Kissane⁵ and De Figueiredo⁶ proposed that Axis IV be conceptualized as the demoralization axis, with separate ratings given for distress and for subjective incompetence. Given the severe impact that demoralization can have on function, De Figueiredo⁷ felt that this state should be recognized as a separate axis, rather than as a V code. In this view, demoralization is always abnormal.⁷

In contrast, Slavney⁸ has argued that demoralization is not a psychiatric disorder at all, but a normal response to adversity. He likened demoralization to grief, which is a nonpathologic reaction to stress, but which may be a focus of clinical attention; grief is assigned a V code in the DSM-IV. He cautioned that mistaking demoralization for a psychiatric disorder has the effect of shifting the burden of care from the patient's primary care physician to the psychiatrist, when what the patient needs is understanding, encouragement, and enhanced engagement.⁸

At present, demoralization lacks a readily applicable and standardized definition that is supported by rigorous research in epidemiology. However, a recent factor analysis by Kissane⁵ identified 5 relatively distinct dimensions in 100 patients with cancer: loss of meaning, dysphoria, disheartenment, helplessness, and a sense of failure. A subgroup of patients with high demoralization did not meet DSM-IV criteria for major depressive disorder, suggesting that demoralization is a clinical syndrome distinct from major depression.⁹

Further work is needed to distinguish demoralization from other dysphoric states (e.g., major depression and adjustment disorder) and to classify it either as a pathologic condition or as a normal reaction to severe circumstances.

The role of character traits such as optimism and resiliency in the development or avoidance of demoralization also needs to be further defined. Demoralization is negatively associated with dispositional or trait optimism and with trait anxiety,¹⁰ but longitudinal observational studies that could confirm causation have not been undertaken. Similarly, more work needs to be done to understand the relationship between demoralization and the construct of hopelessness, which has been found to be independently associated with the desire for hastened death and the will to live.^11,12 Many working definitions of demoralization contain the variable of hopelessness,^10,13 but it is not clear if these definitions of demoralization have predictive value over the construct of hopelessness alone.

The establishment of a diagnosis and an official acceptance in the International Classification of Diseases or the DSM of the American Psychiatric Association requires more data about distinctive symptoms, etiology, clinical course, and treatment outcomes.¹⁴

For example, Mr. A's diminished frustration tolerance and increased mood reactivity while in the hospital were likely due to a sense of demoralization caused by circumstances beyond his control in the hospital. However, his more chronic symptoms of anhedonia, social isolation, and poor concentration are suggestive of a coexisting depressive disorder.

Lastly, it is worth noting that, although severe and debilitating medical illness can frequently lead to demoralization, chronic and disabling mental illness (e.g., schizophrenia) can also be associated with a demoralized state.

Unlike the depressed patient, however, the demoralized patient often does not experience a full complement of neurovegetative symptoms—specifically, anhedonia. Furthermore, mood reactivity is usually preserved in demoralized patients.⁶ Unlike the depressed individual, the demoralized patient can experience hope and feel enjoyment as adversity is overcome. For example, a patient who is suffering from demoralization can experience an improvement in mood in response to a vacation, to successful pain control, or to a visit from someone important, in contrast to a depressed patient who cannot free him or herself from the dysphoric state.

Adjustment disorders are, by definition, abnormal responses to a given situation. Although somewhat controversial, demoralization is still considered a normal response to a difficult situation. The difference between demoralization and adjustment disorders appears to be more of a difference of degree than of kind.

Nearly all types of medical conditions (including traumatic injury [e.g., burns and other disfigurements], acute illness [e.g., myocardial infarction], or chronic illnesses [e.g., rheumatoid arthritis, diabetes mellitus]) can demoralize a patient. Furthermore, demoralization may result from both the illness (and its manifestations) and the treatment of some conditions. For example, the physical discomfort and change of appearance caused by chemotherapy can be just as, or more, demoralizing than the cancer for which chemotherapy was prescribed.^8,13

Of course, many patients with a potentially demoralizing illness or treatment do not become demoralized. Therefore, other factors must contribute to the development of demoralization. Among these are personality traits, the strength of interpersonal supports, and the existential posture that the patient adopts in the face of illness.⁸

A patient whose personality relies on his or her physical integrity will be particularly prone to demoralization when confronted with a debilitating or stigmatizing medical illness. For example, a narcissistic executive who relies on his good looks to influence others may become demoralized when confronted with his own paralysis or facial burns. Or, an individual with obsessive-compulsive traits may become demoralized when confronted by a colostomy for colon cancer and by the requisite colostomy bag (and threats to personal control associated with it) after surgery.⁸

Support from interpersonal relationships helps to deter demoralization. A patient who is isolated from family and friends will have a harder time being resilient in the face of adversity. So too will a patient whose physician is inattentive and patronizing. In the absence of close relationships, patients often find it difficult to make meaning of their medical illness.

Lastly, some patients adopt an existential state that draws them away from goal-directed coping and from engaging with living and toward a state of “giving up.”³ Such psychological states (e.g., confusion, isolation, despair, helplessness, cowardice, and resentment) make a patient more vulnerable to demoralization. By contrast, coherence, communion, hope, agency, purpose, courage, and gratitude characterize and facilitate resilience.¹⁵ See Table 1 for a list of factors that contribute to demoralization.

Table 1. Factors That Contribute to Demoralizationa

In essence, the role of the physician is to witness, to validate, and to normalize the patient's experience of illness. This requires timely identification and treatment of symptoms that can be alleviated (e.g., pain, nausea, constipation, depression, anhedonia, and agitation).³ Exploration with the patient of existential postures that dominate his or her experience is also useful. Physicians can then concentrate their treatment efforts on resilience-building interventions for identified themes.¹³ On many occasions, a patient is confused about his or her situation and is left isolated; the patient does not know what to do and is left feeling alienated and in despair. In such a case, a cognitive approach can be helpful. The physician can provide appropriate information and reassurance, explore the meaning of illness to the patient, and identify and challenge distorted thinking about the illness. For the patient who experiences a loss of mastery and feelings of helplessness and cowardice, setting goals will help the patient to regain a sense of purpose and to reengage with meaningful relationships and activities. Perhaps most important, however, is the approach to the patient who feels isolated and ashamed; shame is an affect that most demoralized patients share. The physician can help such a patient by taking the time to listen empathically and by exploring the meaning of the illness. The patient should be reassured that what he or she is experiencing is a normal part of the illness and not a manifestation of a psychiatric illness. Through this connection, a demoralized patient can begin to regain a sense of value as a person and to feel less alienated from the world.

Once the team understood why Mr. A's pain went undertreated, they were able to address his concerns and to persuade him to take additional medication. The team explained to Mr. A and his wife the difference between dependency and addiction and assured them that fewer than 2 in 10,000 cancer patients with pain develop an opiate addiction.¹⁷ In an effort to rapidly improve Mr. A's pain, he was treated aggressively; his basal rate of pain medication was increased and intravenous preparations were employed until his pain was controlled.

Once his pain was controlled, Mr. A's mobility improved, and he became more self-reliant. With an increased sense of control over his life, Mr. A became less demoralized. He was pleased with the changes made, and his interactions with the medical team and with his family improved. He denied further suicidal ideation. Nonetheless, his cognitive difficulties persisted, as did his weight loss and fatigue. Head imaging revealed no intracranial pathology to account for his cognitive and attentional symptoms. A trial of methylphenidate (with a maximum dose of 20 mg twice daily) did not prove efficacious. And although his physicians suggested a trial of antidepressant medications, the patient declined, saying that he no longer felt depressed. One month after his discharge from the hospital, Mr. A died from end-stage colorectal cancer in an outside hospital.

Mr. A's hospital course was complicated; poorly controlled pain induced psychological suffering and suicidal ideation. When his pain was adequately controlled, Mr. A's mood improved, although he continued to suffer from complications of end-stage cancer (e.g., poor concentration, fatigue, and increasing dependency on others). Mood disturbances are common in patients with cancer; 10% to 25% of cancer patients suffer from depression,¹⁸ and Mr. A's medical team struggled with the diagnosis and treatment of his depression. Once his pain was adequately controlled and his mood improved, it became more apparent that he did not suffer from major depression. The term demoralization was useful in this context, as it describes a dysphoric mood that can change in response to external circumstances—in this case, improved pain control. By understanding Mr. A to be demoralized, the team was able to address the underlying causes of his psychological state and alleviate the patient's psychological as well as physical suffering.