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10.1177/000276402237769
Pessin
et al. / DISTRESS
BEHAVIORAL
NEAR
SCIENTIST
THE END OF LIFE
BARRY ROSENFELD
Fordham University
WILLIAM BREITBART
Memorial Sloan-Kettering Cancer Center
Psychological suffering is one of the most significant and potentially remediable impediments to the dying process for terminally ill patients and their families. This article reviews
several of the most common psychological disorders that arise in the context of terminal illness, including depression, anxiety, delirium, and suicidal ideation. Issues related to assessment, measurement, and differential diagnosis are reviewed.
Psychological suffering is one of the most significant and potentially remediable impediments to the dying process for terminally ill patients and their families. Common psychiatric problems near the end of life include depression, anxiety, delirium, and suicidal ideation, all of which can emerge during the course of
a terminal illness. A number of medical and psychosocial issues can lead to these
various disorders, including medication side effects, physical impairments,
dependency, bereavement, and family dysfunction, all of which frequently cooccur during a terminal illness and can increase the risk of psychological/psychiatric difficulties (Breitbart, Chochinov, & Passik, 1998). Yet despite the
importance of identifying and treating psychological/psychiatric symptoms
near the end of life, mental health clinicians often receive little training or education in the assessment or treatment of mental disorders in people who are dying.
This article focuses on several of the most common psychological/psychiatric
problems associated with terminal illness and highlights assessment strategies
that are useful in clarifying the appropriate clinical diagnosis and treatment
response.
The presence of psychological distress, even at a mild to moderate level, can
have a significant effect on the patient in the last weeks of life. Many patients
describe a decrease in their capacity for pleasure, sense of meaning in their lives,
and ability to make connections with others and cite these difficulties as having a
AMERICAN BEHAVIORAL SCIENTIST, Vol. 46 No. 3, November 2002 357-372
DOI: 10.1177/000276402237769
2002 Sage Publications
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negative effect on their overall quality of life (Breitbart, Bruera, Chochinov, &
Lynch, 1995). For example, a patients ability to perform the emotional tasks
involved in separating and saying goodbye may become compromised as psychological distress increases. Psychiatric distress has also been shown to
amplify the perception of pain, at times resulting in the need for more aggressive
pharmacological interventions than would otherwise be necessary (Massie &
Holland, 1992). In extreme cases, the patients ability to make rational treatment
decisions may become compromised by psychiatric symptoms, causing particular problems during the late stages of illness because many important medical
decisions arise near the end of life. Psychiatric symptoms can also lead to
heightened distress and worry among friends and family members, possibly
leading to a downward spiral as family distress further fuels patient distress
(Block, 2000). Finally, extreme psychological distress is a major risk factor for
suicidal ideation and suicide attempts as well as for requests for assisted suicide
and desire for hastened death (Rosenfeld, Breitbart, Krivo, & Chochinov, 2000).
Despite the importance of identifying and treating psychological distress
near the end of life, a number of obstacles converge to significantly complicate
this task (Shuster, Breitbart, & Chochinov, 1999). First, medical professionals
often have difficulty recognizing symptoms and behaviors as reflective of psychological distress. Emotional distress is often viewed by clinicians and family
members as a normal, inevitable, and appropriate response to dying, thus
obscuring the distinction between normal and more severe or pathological distress. Even when symptoms are recognized, distinguishing between medical
and psychological etiologies is often difficult, potentially leading to incorrect or
insufficient clinical interventions. In addition, the frequent medical complications that accompany terminal illness may further obscure the process of making
accurate diagnoses. Even when a diagnosis has been rendered, many clinicians
are reluctant to recommend treatment because of the belief that terminally ill
patients will not respond to interventions, leading to an attitude of therapeutic
nihilism (Shuster et al., 1999). Concern about the stigma associated with a psychiatric referral or the possibility of adverse effects from psychotropic medications also deters both physicians and patients from seeking or accepting services
(Block & Billings, 1994). Finally, both patients and clinicians often collude to
avoid discussing psychological distress because of concerns that these discussions may exacerbate distress or distract the physician from the more important medical problems (Maguire, 1985).
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ill cancer patients. They asked patients, Have you been depressed most of the
time for the past two weeks? and compared responses to the results of a structured diagnostic interview. Remarkably, they found this question had 100% sensitivity and specificity in detecting depression, although their criterion was the
presence of either a major depressive episode or a minor depression. Because the
latter diagnosis requires only that patients have a depressed mood and as few as
two additional symptoms, their results essentially indicate that no depressed
patients failed to acknowledge their depression. Nonetheless, their results highlight an important message for clinicians working with the terminally illthe
need to ask patients how they feel emotionally as well as physically.
Because of the confounding influence of physical health on symptom presentation, diagnostic clinical interviews remain the most common method of
assessing depression in the palliative care setting (Wilson et al., 2000). Clinical
assessments enable the clinician to try and disentangle the etiology of these
often ambiguous symptoms as well as to best capture the spectrum of depressive
disorders described earlier. But more rapid and systematic methods are often
useful for screening terminally ill patients, even if only to decide which patients
require a more thorough clinical assessment. Numerous self-report rating scales
for depression exist, many of which have been used in medically ill and terminally ill populations. Among the most commonly used and most clinically useful are the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith,
1983); the Beck Depression Inventory (BDI) (Beck, Ward, Mendelson, Mock,
& Erbaugh, 1961) and its abbreviated version, the BDI Short Form (BDI-SF)
(Beck & Beck, 1972); and the Zung self-rating scale for depression (Zung,
1967). Of these measures, only the HADS and the BDI-SF were specifically
designed to avoid the confounding influence of somatic symptoms, although
many clinicians and researchers simply omit the somatic items from the other
scales to minimize this confound.
A significant limitation of all self-report measures of depression is the difficulty converting symptom severity ratings to a clinical diagnosis. Although various cutoff scores exist for these rating scales, most overdiagnose depression in
medically ill samples in part because the cutoff scores have been developed on
physically healthy samples. Instead, structured diagnostic interviews have
become the norm for research investigations in which a diagnosis of depression
is required. The most commonly used diagnostic inventories include the Diagnostic Interview Schedule (DIS) (Robins, Helzer, Croughan, & Ratcliff, 1981)
and the Structured Clinical Interview for DSM (SCID) (Spitzer, Williams, Gibbon, & First, 1990). The DIS is particularly popular when evaluations will not
use trained clinicians as interviewers because the highly structured format permits its use by trained lay interviewers. The SCID, on the other hand, is a
semistructured interview intended for clinicians who are experienced in the
diagnosis and assessment of mental disorders. This instrument, which shadows
the DSM-IV (American Psychiatric Association, 1994) criteria, primarily
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ensures that the evaluator adheres to a standard set of questions and prompts and
follows the established diagnostic criteria, thereby enhancing reliability. However, all of these measures are much more time consuming and often very cumbersome than either a traditional unstructured clinical interview or the brief
screening questionnaires. Thus, their utility for routine clinical practice and in
palliative care settings in particular is often limited (Wilson et al., 2000).
CASE VIGNETTE: DIFFERENTIAL DIAGNOSIS OF DEPRESSION
Mr. B, a 47-year-old, married, father of two, was diagnosed with end-stage colon
cancer several months ago. He was referred for a mental health evaluation by his
oncologist after he inquired as to the possibility of euthanasia should his condition
worsen. His initial presentation was unremarkable, as he smiled occasionally and
showed no overt sadness or distress. However, he explained that he has increasingly felt himself to be a burden to his wife, who has been forced to care for him in
addition to their young children. He described feelings of guilt, based largely on
what he characterized as an inadequate life insurance policy that although substantial was not sufficient to prevent his wife from needing to resume work after his
death. He had begun to discourage friends and family members from visiting him,
explaining that he does not want to be seen in such a debilitated condition although
he acknowledged that these visits no longer brought him pleasure. Mr. B also
revealed that although he was once an avid sports fan, he has lost all interest in
watching sporting events on TV and no longer reads the newspaper. He initially
attributed these changes to problems concentrating but later indicated that he is
simply not interested in these activities that were once a central focus of his
attention.
After an initial consultation, Mr. B was prescribed an antidepressant medication (a serotonin-specific reuptake inhibitor) and was seen twice weekly for psychotherapy focused largely on cognitive reframing and exploring interpersonal
issues. There was only modest improvement from these initial interventions even
after the medication was increased. After several weeks, Mr. B was started on a
psychostimulant even though his physical condition had continued to deteriorate.
Within a few days, Mr. B showed a marked improvement, smiling more, reading
the newspaper and watching television frequently, and encouraging visits from
friends and family members. Importantly, he appeared to become much less
focused on his impending death and seemed genuinely able to enjoy these visits.
Although Mr. B died 6 weeks later, he had resolved many of the issues that had
been so troubling to him for the past months.
This vignette highlights the importance of cognitive symptoms as a mechanism for distinguishing normal sadness from a major depression. Mr. Bs lack of
interest in activities and visits with friends and family were a central manifestation of his depression. Furthermore, although many clinicians rely on traditional
interventions, whether clinical or pharmacological, alternative approaches (e.g.,
psychostimulants) are often quite effective in palliative care settings (Breitbart
et al., 1998).
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The similarities between depression and anxiety also extend into the assessment realm as the confounding influence of somatic symptoms is no less problematic for the assessment of anxiety than it is for depression. Yet unlike depres-
364
sion, clinicians and researchers have rarely attempted to disentangle these influences in studying anxiety among the terminally ill, instead relying on traditional
assessment techniques. Indeed, the diagnosis of anxiety is almost invariably
determined by a standard diagnostic interview with little attempt to separate
what might be a physical etiology from those that are more psychological in
nature. But many of the symptoms of anxiety (e.g., sweating, shortness of
breath, gastrointestinal distress, and heart palpitations) can be manifestations of
the underlying disease or side effects of medications (analgesics in particular),
making etiological distinctions crucial. Although many clinicians routinely prescribe anxiolytic medications to medically ill individuals regardless of whether
their patient suffers from an anxiety disorder, psychotherapy, relaxation techniques, and other psychotherapeutic interventions may be more useful when the
etiology is not organic (Massie & Payne, 2000).
When patients are cognitively intact, the use of instruments specifically
designed to identify and quantify anxiety can add considerable specificity to the
assessment process and aid in monitoring treatment progress (Payne & Massie,
2000). Among the most widely used and clinically useful instruments to measure anxiety in the terminally ill are the HADS (Zigmond & Snaith, 1983) and
the State-Trait Anxiety Inventory (STAI) (Spielberger, 1983). The HADS is a
brief (14-item) self-report measure that assesses cognitive symptoms associated
with depression and anxiety, thus avoiding the confounding influence of physical symptoms. The STAI is considerably longer but allows for the differentiation
of stable, chronic forms of anxiety from those that are transient or situational
(although many researchers use only the state items to abbreviate the assessment). Both measures have been frequently used in medically ill populations
and minimize the problematic influence of somatic symptoms that plague many
other assessment tools (e.g., the Beck Anxiety Inventory) (Beck & Steer, 1990).
CASE VIGNETTE: DIFFERENTIAL DIAGNOSIS OF ANXIETY
365
that her behavior was driven by anxiety. She was subsequently prescribed an
anxiolytic that lowered her distress level significantly, enabling her to leave her
room and engage in activities, participate in discussions regarding her illness with
her family members, and sleep (although she still preferred to sleep in her chair
rather than the bed). It was not until days later, after several sessions with the staff
psychologist focused on the basis for her fears (about dying, not her bed) and helping her learn relaxation and guided imagery techniques, that Ms. U resumed sleeping in her bed.
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judgment as to the presence or absence of delirium, such as the ConfusionAssessment Method (Inouye et al., 1990); and (c) delirium rating scales that can
be used to assess the likelihood of a delirium diagnosis and/or estimate delirium
severity, such as the Delirium-Rating Scale (Trzepacz, Baker, & Greenhouse,
1988) and the Memorial Delirium Assessment Scale (MDAS) (Breitbart et al.,
1997). Of these three types of measures, tests of cognitive impairment have been
criticized because of their relative insensitivity to subtle indicators of delirium
and poor specificity, such as failing to differentiate delirium from dementia
(Smith, Breitbart, & Platt, 1994). Although the predictive accuracy of deliriumspecific instruments have often been unimpressive, instruments such as the
MDAS that were developed to facilitate repeated assessments offer a number of
advantages over simple diagnostic algorithms, particularly in terms of assessing
changes (e.g., improvement in response to interventions). In general, however,
none of these approaches to assessing delirium are ideal, and the optimal use of
these instruments is probably for monitoring delirium severity and treatment
response, whether for clinical or research purposes (Smith et al., 1994).
CASE VIGNETTE: DIFFERENTIAL DIAGNOSIS OF DELIRIUM
368
Several features of delirium are useful indicators for distinguishing this disorder from other conditions such as depression, anxiety, or dementia. Particularly in the context of advanced disease, a central indicator of delirium is the
rapid onset of cognitive changes because depression, dementia, and other possible causes of confusion tend to emerge gradually. The temporal sequencing of
symptoms is another useful marker for identifying delirium because cognitive
impairment (e.g., confusion and disorientation) or psychotic symptoms (e.g.,
hallucinations and paranoid ideation) usually emerge much later in the course of
a mood or psychotic disorder, whereas they emerge rapidly in the context of
delirium. Finally, a hallmark of delirium is a disturbance in arousal (i.e., excessive sedation interspersed with periods of agitation or hyperalertness), whereas
this symptom is typically absent from nonorganic psychiatric disorders
(Breitbart & Cohen, 2000).
369
heading of desire for hastened death, with the acknowledgement that some
important differences may exist (and a thorough review of suicide, assisted suicide, and euthanasia is beyond the scope of this article).
Studies of terminally ill cancer and AIDS patients have demonstrated that the
desire for hastened death is much more common in the context of a severe
depression (Breitbart et al., 2000; Chochinov et al., 1995; Rosenfeld, 2000).
Recent studies have found hopelessness to be an even more powerful factor in
driving desire for death (Breitbart et al., 2000; Ganzini, Johnston, McFarland,
Tolle, & Lee, 1998). Yet many clinicians acknowledge that some patients who
express thoughts of suicide or even request assisted suicide are not necessarily
intent on dying (Foley, 1995). Rather, some proportion of these statements may
reflect a cry for help in which the patient is trying to convey the magnitude of her
or his distress.
Hence, an evaluation of a terminally ill patient who has mentioned suicide or
euthanasia must involve more than simply assessing the severity of the patients
depression. Rather, a thorough assessment of her or his physical and emotional
state, including the possible presence of delirium and inadequately treated pain
or other symptoms, must precede any clinical intervention. Furthermore, many
patients experience substantial benefits from simply discussing their concerns
with a clinician because friends and family are often uncomfortable with end-oflife discussions. When such discussions do occur, however, it is imperative that
clinicians approach end-of-life topics in a nonjudgmental manner because
patients may perceive any reluctance on the part of the clinician as evidence that
this important topic is taboo. Although any clinical intervention with a potentially suicidal patient should certainly include an assessment of physical and
psychological symptoms that might be contributing to the patients distress,
clinical interventions should also target patients feelings of hopelessness, loss
of meaning in life, and spiritual distress.
Regardless of whether one favors or opposes assisted suicide in principle,
mental health care in the context of terminal illness should focus on aggressively
managing all of the uncontrolled physical and psychological symptoms such as
uncontrolled pain, unrecognized delirium, and unrecognized and untreated
depression. Prolonged suffering (or fear of prolonged suffering) caused by
poorly controlled symptoms, whether physical or psychological in nature, can
lead to feelings of desperation and hopelessness. It is the responsibility of the
palliative care team to provide effective management of physical and psychological symptoms to reduce the desire for hastened death and therefore suicidal
ideation and requests for assisted suicide.
SUMMARY
Psychological distress near the end of life can take many forms, some of
which are more readily identifiable and treatable than others. As palliative care
370
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