Anhedonia

Anhedonia is a hallmark symptom of depression in the terminally ill; however, it may present somewhat differently in this population than in a general psychiatric population. Due to the severity of illness there may be many limitations on sources of pleasure and feasible activities available to the patient. Therefore it is critical to carefully assess the patient's interest, will, and desire, rather than actual engagement in activities to determine if there is a loss of or diminished sense of pleasure. For instance, a patient may report difficulties spending time with relatives due to fatigue or severe pain but still might endorse a strong desire to do so. Patients may often focus on what they can no longer do. In some cases, the patient may make statements such as “I would like to play golf if I could, but I can't.” The expression of such a wish may be enough to rule out anhedonia. Another effective technique is to inquire about what the patient is still able to do or enjoy, such as eating, watching television, reading, visits, participation in hospital activities, interest in current events, and settling their affairs. Clinicians should also ask open-ended questions such as, “Is there anything you look forward to doing or find pleasure in now?” In the unusual instance that a patient reports no sources of pleasure after such a comprehensive evaluation has been conducted, anhedonia related to depression is strongly indicated.

Depressed Mood

Many patients near the end of life experience some feelings of dysphoria or find themselves tearful as part of the dying process. Patients may express appropriate sadness when discussing prognosis, medical decisions, or family issues. For example, a patient might cry frequently when speaking about not being able to see her young children grow up, but may not express or endorse other symptoms of depression. Although such transient feelings are normal, sustained, more severe symptoms such as profound despondency, constant crying, or a pervasive flatness of affect may indicate a clinical depression. To avoid the overdiagnosis of depression, the extent and duration of the sadness should be substantial (nearly every day, for most of the day, for several consecutive days). On the other hand, patients who report a lack of sadness and appear to have the opposite problem (a constriction of affect) may also be depressed, as the more severe cases of depression are characterized by a lack of affect. Finally, it may be appropriate to be lenient regarding the two-week-or-more time criteria because the need to treat quickly in this population is often imperative.

Suicidal Ideation

In the terminally ill, some thoughts about death and dying are appropriate and do not necessarily indicate suicidal ideation or depression. Typical concerns may include fears around the dying process, contemplation of an afterlife, and other existential issues. Although a fleeting wish for death is relatively common as death approaches, preoccupation with a desire to die for long periods of time is more unusual and warrants attention. Feelings that life is no longer worth living or expressing a desire to die may be more pathological and indicative of depression. Further, clinicians need to distinguish between readiness for death or the wish to die sooner rather than later and active suicidal ideation. For example, a patient might state, “If I died tomorrow that would be okay, but I'd never do anything to make it happen.” Therefore, it is essential to determine the presence of a current or future intent or plan for suicide. It is also important to be aware that a desire to die may result from severe, incapacitating pain or uncontrolled symptoms and not depression, in which case treatments geared toward symptom amelioration should be utilized and may result in a quick diminishing of desire for death.

Hopelessness

Hopelessness is often “the forgotten symptom” of depression in palliative care settings because clinicians tend to assume that all patients experience despair as they approach the end of life. However, research has demonstrated that elevated levels of hopelessness are not typical, occurring in only approximately 20% of patients (Breitbart et al., 2000; Chochinov et al., 1998). In addition, because hopelessness is highly predictive of desire for hastened death and suicidal ideation (Breitbart et al., 2000), it is crucial to assess among this population. When conducting such an assessment, one thing to keep in mind is that a clear understanding of one's prognosis should not be misunderstood as hopeless thinking. For example, a patient may state that she has given up hope for recovery and is expecting to die within a month. Such a statement, if corroborated by her medical records, is likely indicative of a realistic outlook rather than an irrational, hopeless one and is not indicative of depression. For many terminally ill patients, however, hope does not disappear, it changes. The specific nature of their hopes may change to such themes as a pain-free death, spending quality time with family, a better existence in the afterlife, or looking forward to an upcoming life event. When interviewing a patient, it is often useful to specifically mention these potential sources of hope and elicit that patient's reactions to them. People who are pervasively hopeless and are unable to find hope from any source should be further assessed for depression (Block, 2000).

Worthlessness and Guilt

Negative cognitions such as worthlessness and guilt are often strong indicators of depression. Caution should be taken when assessing worthlessness and guilt within a palliative care population. First, clinicians must distinguish feelings of worthlessness (feeling that one's life has no value) from helplessness linked to loss of functioning or independence. Many patients approaching death may struggle with feelings of helplessness due to their inability to care for themselves. Such feelings are common and may contribute to depression but not necessarily be indicative of depression. More global feelings of worthlessness that present more like a loss of self-esteem tend to be less common.

Assessing the presence of guilt can be challenging because many patients engage in a type of “life review,” noting proud moments and areas of regret as they approach the end of their lives. As with other symptoms, degree and intensity should be considered. Negative thoughts related to past deeds, such as disappointing a loved one or failing to uphold a responsibility, are relatively common. However, excessive feelings of guilt or the belief that one's illness is a punishment are more concerning. Guilt may also manifest as feelings of being a burden to loved ones.

Insomnia and Hypersomnia

Although change in sleep patterns, typically difficulty sleeping, is often indicative of possible depression among a physically healthy population, this is not necessarily so among patients with advanced disease. Hypersomnia is so ubiquitous in the terminally ill that it is almost impossible to determine the etiology. Conversely, many patients experience insomnia due to physical pain, inactivity during the day, or disruptions by nursing staff during the night, and it is very difficult to determine if depressive feelings or thoughts are contributing to the insomnia. Additionally, even when depression underlies the symptom of insomnia, it may be masked by sleep aids or analgesics. Although it is often impossible to determine the etiology of a patient's insomnia, it is useful to inquire about the thoughts the patient is having during the night when awake. If a patient is able to lie in bed and read until he returns to sleep, depression is an unlikely culprit. However, if the patient lies awake experiencing disturbing or negative thoughts, depression may be at least partially to blame and requires further assessment.

Changes in Appetite and Weight

Changes in appetite and weight often result due to advanced physical disease; therefore, the use of weight and appetite changes to diagnose depression in the terminally ill is minimally useful. Patients may lose their appetites due to the resulting physical discomfort when they eat, resulting in weight loss. Also, certain illnesses preclude the oral ingestion of food, again resulting in weight loss but a preservation of appetite. Finally, water retention, due to steroids or other medications, is common and often results in weight gain unrelated to increased appetite or food consumption. If a patient is able to eat without physical difficulties, lack of appetite and loss of weight may be indicative of depression. Similarly, if a patient explains that they are overeating to comfort himself when sad, it is possible that weight gain may be a symptom of depression.

Diurnal Variation

It is common for people experiencing major depression to experience a relative lift in mood later in the evening or at night compared to their mood during morning and midday. Such diurnal variation may appear to be similar in a depressed patient who is terminally ill compared to a depressed, physically health patient. When patients present with diurnal mood variation, clinicians should determine whether these mood changes may be influenced by visiting hours, staff shift changes, or a change in activity levels. In these instances, mood variation may be more due to these environmental changes than to true diurnal shifts.

Psychomotor Retardation and Agitation

Metabolic changes due to physical illness and medication can cause psychomotor retardation, making it difficult to determine whether such retardation may be due to depression in a terminally ill patient. It is useful to monitor motor movements that are unlikely to be caused by medical illness, such as eye contact, rate and tone of speech, and head turning, when assessing for depression in this population. Someone who fails to make eye contact when speaking or fails to turn his or her head toward the interviewer may be displaying retardation due to depression. Additionally, agitation, such as playing with one's hands, can also be caused by medications. However, it is also possible that fidgeting and restlessness experienced by a terminal patient may be due to anxiety or depression similar to that experienced by a physically healthy patient.

Hypochondriasis

Some degree of hypochondriasis should be considered appropriate unless extreme. Patients may routinely focus on or complain about specific symptoms, wounds, or pain, but if this becomes a preoccupation or obsessive in nature it may be problematic. Patients who are experiencing these difficulties will often offer unsolicited information about their health or discuss their somatic concerns in an overly detailed manner.

Concentration

Several factors make it difficult to assess concentration in the terminally ill. Medications, pain, fatigue, treatment-related side effects, and metabolic changes can impair concentration and attention span, making it difficult to assess depression. Changes in mental status may also be related to the onset of delirium. Efforts should be made to assess the quality of thinking and the ability to process information. It may also be helpful to determine if these changes are concurrent with the onset of mood fluctuations.

Sexual Symptoms

Assessing changes in libido, which are typically more relevant in a physically healthy population, may be perceived as inappropriate in this population and therefore should be discussed with sensitivity. It may be more appropriate to allow patients to raise concerns if they are present. Clinicians should assess whether these symptoms are related to physical or emotional factors.