AMERICAN

10.1177/000276402237769
Pessin et al. / DISTRESS
BEHAVIORAL
NEAR
SCIENTIST
THE END OF LIFE

Assessing Psychological Distress

Near the End of Life
HAYLEY PESSIN
Memorial Sloan-Kettering Cancer Center
BARRY ROSENFELD
Fordham University
WILLIAM BREITBART
Memorial Sloan-Kettering Cancer Center

Psychological suffering is one of the most significant and potentially remediable impedi-
ments 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 ill-
ness, including depression, anxiety, delirium, and suicidal ideation. Issues related to assess-
ment, measurement, and differential diagnosis are reviewed.

Psychological suffering is one of the most significant and potentially remedia-

ble impediments to the dying process for terminally ill patients and their fami-
lies. Common psychiatric problems near the end of life include depression, anx-
iety, 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 co-
occur during a terminal illness and can increase the risk of psychological/psy-
chiatric 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 educa-
tion 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

357
358 AMERICAN BEHAVIORAL SCIENTIST

negative effect on their overall quality of life (Breitbart, Bruera, Chochinov, &
Lynch, 1995). For example, a patient’s ability to perform the emotional tasks
involved in separating and saying goodbye may become compromised as psy-
chological 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 patient’s ability to make rational treatment
decisions may become compromised by psychiatric symptoms, causing particu-
lar 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 psy-
chological 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 dis-
tress. 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 complica-
tions 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 psy-
chiatric referral or the possibility of adverse effects from psychotropic medica-
tions 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 discus-
sions may exacerbate distress or distract the physician from the “more impor-
tant” medical problems (Maguire, 1985).

DEPRESSION NEAR THE END OF LIFE

Depressed mood and sadness are common, even appropriate responses for
patients who are facing a progressive illness that will ultimately lead to their
death. Whether due to anticipatory grief over the impending loss of health,
autonomy, loved ones, and life or a biochemical reaction related to one’s illness
 Pessin et al. / DISTRESS NEAR THE END OF LIFE 359

or side effects, feelings of depression are so common as to be almost unnoticed

in many terminally ill individuals. Yet despite the common occurrence of feel-
ings of sadness and depression among terminally ill individuals, the presence of
a major depressive episode is much less common. Furthermore, a major depres-
sive episode presents several obstacles to patients who must deal with both com-
plex medical decisions and difficult psychological tasks such as separating from
their family and putting their affairs in order (Block, 2000). In short, depression
significantly diminishes overall quality of life and complicates symptom con-
trol, resulting in more frequent admission to inpatient care settings.
Although normal sadness and major depressive episode reflect two ends of
the depression continuum, other less severe forms of depression are also com-
mon among terminally ill individuals. Many terminally ill patients suffer from
more modest symptoms of depression that do not rise to the threshold of a major
depression. Clinicians and researchers have used various terms to describe these
syndromes, including minor depression and adjustment disorder. The former,
although not recognized in the current diagnostic manual (Diagnostic and Sta-
tistical Manual of Mental Disorders, fourth edition; DSM-IV) (American Psy-
chiatric Association, 1994), is conceptually similar to major depression but
requires fewer symptoms to qualify for a diagnosis. Adjustment disorder, on the
other hand, is a common diagnosis in medical settings (Lynch, 1995). Adjust-
ment disorder with depressed mood describes a relatively short-lived
maladaptive reaction to an identified stressor, but the patient’s depression must
be “in excess of a normal and expectable reaction.” Differentiating between a
normal and expectable response to catastrophic medical circumstances and an
excessive reaction in the context of terminal illness is obviously problematic.
When these criteria are applied loosely, the diagnosis of adjustment disorder is
overutilized, pathologizing the experience of many patients. However, if used to
too conservatively, patients experiencing significant distress may be denied
relief from ameliorable symptoms (e.g., if physicians fail to provide necessary
treatment).
Whatever the appropriate diagnosis (if any) to characterize a patient’s
depressive symptoms, there is a growing awareness that severe depression is
underdiagnosed and undertreated in palliative care settings (Passik et al., 1998).
There are several reasons why depression is underdiagnosed among the medi-
cally or terminally ill, including the apparent minimization of these symptoms
by clinicians, the failure of patients to call attention to their psychological dis-
tress, and the misattribution of depressive symptoms to somatic causes. Even
when depression is recognized, concerns that severely ill patients will not be
able to tolerate the side effects or drug interactions associated with antidepres-
sant therapies may significantly hinder the treatment of these disorders (Plumb
& Holland, 1977). Nevertheless, given the potential for important clinical bene-
fits from identifying and treating depression in patients with advanced illnesses,
distinguishing between normal sadness and a major depressive episode has sig-
nificant implications (Block, 2000).
360 AMERICAN BEHAVIORAL SCIENTIST

ASSESSMENT OF DEPRESSION NEAR THE END OF LIFE

A critical problem associated with diagnosing depression in medically ill

patients lies with the issue of how best to interpret the physical/somatic symp-
toms of depression. In particular, several of the symptoms listed in the DSM-IV
(American Psychiatric Association, 1994) as criteria for a depressive disorder
diagnosis (e.g., weight loss/diminished appetite, fatigue, sleep disturbance, and
poor concentration) are common sequelae of both the disease process and
somatic therapies. Disentangling the possible etiologies of these seemingly
ambiguous symptoms can be a challenging task for the clinician yet may have
important ramifications for the diagnosis and assessment of depression.
Endicott (1984) proposed the following four different approaches to the diagno-
sis of major depression in the context of medical illness: an inclusive approach
(including all symptoms regardless of whether they may be secondary to
advanced illness or treatment), an exclusive approach (disregarding physical
symptoms from consideration when making a diagnosis), an etiologic approach
(attempting to determine if the symptom is due to illness, treatment, or depres-
sion), and a substitutive approach (replacing traditional physical symptoms of
depression where the etiology is uncertain with other symptoms). Specifically,
Endicott proposed substituting four cognitive/affective symptoms of depression
(fearfulness or depressed appearance, social withdrawal or decreased talkative-
ness, brooding/self-pity, and lack of emotional reactivity) for the four “vegeta-
tive” symptoms currently used in the DSM-IV. Although intuitively appealing
and frequently cited by clinicians in palliative care settings, the actual effect of
this substitution process on clinical diagnosis may be quite modest (Chochinov,
Wilson, Enns, & Lander, 1994).
However, other studies have suggested that the cognitive symptoms of
depression (e.g., anhedonia and feelings of hopelessness, worthlessness, and
guilt) are more accurate indicia of depression in medically ill individuals (Passik
et al., 2000). In fact, anhedonia is a central aspect of any assessment of depres-
sion in the medically ill, although assessing this symptom in a palliative care set-
ting is often quite complex. Anhedonia is defined as a loss of interest or pleasure
in activities but is often confounded by the functional decline that accompanies
advanced illness. As physical limitations restrict a patient’s ability to participate
in activities, some disengagement from activities or interests is common.
Patients who are not depressed, however, will typically refocus their interests to
those that are less physically or mentally demanding (e.g., social interactions
and prayer/meditation) without losing interest in activities altogether (Wilson,
Chochinov, de Faye, & Breitbart, 2000). When pervasive, anhedonia can mani-
fest as a total loss of interest or pleasure in all activities, including interactions
with loved ones. In these latter cases, severe anhedonia is virtually
pathognomonic of a major depression.
Chochinov, Wilson, Enns, and Lander (1997) examined the utility of a single
question, albeit a different one, in assessing depression in a sample of terminally
 Pessin et al. / DISTRESS NEAR THE END OF LIFE 361

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 struc-
tured diagnostic interview. Remarkably, they found this question had 100% sen-
sitivity 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 high-
light an important message for clinicians working with the terminally ill—the
need to ask patients how they feel emotionally as well as physically.
Because of the confounding influence of physical health on symptom presen-
tation, 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 termi-
nally ill populations. Among the most commonly used and most clinically use-
ful 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 diffi-
culty converting symptom severity ratings to a clinical diagnosis. Although vari-
ous 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 Diag-
nostic Interview Schedule (DIS) (Robins, Helzer, Croughan, & Ratcliff, 1981)
and the Structured Clinical Interview for DSM (SCID) (Spitzer, Williams, Gib-
bon, & First, 1990). The DIS is particularly popular when evaluations will not
use trained clinicians as interviewers because the highly structured format per-
mits 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
362 AMERICAN BEHAVIORAL SCIENTIST

ensures that the evaluator adheres to a standard set of questions and prompts and
follows the established diagnostic criteria, thereby enhancing reliability. How-
ever, all of these measures are much more time consuming and often very cum-
bersome 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 increas-
ingly 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 substan-
tial 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 medica-
tion (a serotonin-specific reuptake inhibitor) and was seen twice weekly for psy-
chotherapy 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 mecha-

nism for distinguishing normal sadness from a major depression. Mr. B’s lack of
interest in activities and visits with friends and family were a central manifesta-
tion 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).
 Pessin et al. / DISTRESS NEAR THE END OF LIFE 363

ANXIETY NEAR THE END OF LIFE

Similar to depression, clinicians often assume that high levels of anxiety

inevitably accompany the terminal phase of an illness, yet this assumption is nei-
ther helpful nor accurate for the diagnosis and treatment of anxiety when it is
present. Anxiety may arise in response to illness-related stressors (e.g., an adjust-
ment disorder), may be a long-standing or chronic condition, or may arise from
iatrogenic sources (e.g., medical complications of the illness or treatments)
(Payne & Massie, 2000). These issues are all compounded in the context of a ter-
minal illness, when fears about disability, disfigurement, dependency, and death
are exacerbated by the reality of impending death.
Anxiety is quite common in patients receiving palliative care and can reduce
a patient’s tolerance for physical distress, especially pain, and substantially
impede overall functioning (Noyes, Holt, & Massie, 1998). Yet despite the clini-
cal and conceptual importance of anxiety in end-of-life care, the empirical liter-
ature on this topic is surprisingly limited. Few studies have measured anxiety (as
opposed to psychological distress more generally), and fewer still have
attempted to identify and describe pathological anxiety states. Because of the
overlap between anxiety and depressive syndromes, which is well established in
the general population and even more pronounced in the context of terminal ill-
ness (Brandberg, Bolund, & Sigurdardotti, 1992), distinguishing between these
two disorders is not always easy. Most depressed individuals also report consid-
erable anxiety, although the reverse is not necessarily true (i.e., anxious patients
are not always depressed).
Further complicating differentiation among these syndromes is the overlap
between both anxiety and depression with delirium (discussed further below).
Patients with delirium often present with symptoms of anxiety, irritability, and
motor restlessness, and delirious patients are frequently mislabeled as “anx-
ious” (Wise & Rieck, 1993). The distinction between anxiety and delirium,
however, is relatively clear to the experienced clinician because delirium usually
involves substantial cognitive impairment, such as disorientation and memory
impairment, whereas anxiety does not (Payne & Massie, 2000). Uncontrolled
pain can also lead to anxiety symptoms, such as tension, restlessness, perspira-
tion, and agitation (Sternbach, 1974). Hence, some writers suggest that anxiety
should be considered the primary diagnosis only if it persists after pain is ade-
quately controlled (Payne & Massie, 2000).

ASSESSMENT OF ANXIETY NEAR THE END OF LIFE

The similarities between depression and anxiety also extend into the assess-
ment realm as the confounding influence of somatic symptoms is no less prob-
lematic for the assessment of anxiety than it is for depression. Yet unlike depres-
364 AMERICAN BEHAVIORAL SCIENTIST

sion, clinicians and researchers have rarely attempted to disentangle these influ-
ences 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 pre-
scribe anxiolytic medications to medically ill individuals regardless of whether
their patient suffers from an anxiety disorder, psychotherapy, relaxation tech-
niques, 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 mea-
sure 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 physi-
cal 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 assess-
ment). 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

Ms. U, a 59-year-old divorced, Hispanic woman who was recently hospitalized

because of end-stage breast cancer, was referred for evaluation because of her
“bizarre” behavior. Specifically, Ms. U was observed sitting in a chair in her room
all night long, often sobbing uncontrollably, and refused requests by nursing staff
or her physician to sleep in her bed. The evaluating psychologist initially sus-
pected that Ms. U’s behavior might be due to uncontrolled pain that she reported
having, but her behavior was unchanged even after her pain medications were
increased to the point of pain relief. Upon interview, Ms. U revealed her fear that
she would die if she went to bed. She believed that she could stave off death indefi-
nitely by remaining awake and in her chair. She also reported feelings of “panic”
whenever she thought of dying, was preoccupied with fears about how her son
would fare after her eventual death, and became tremulous and short of breath
whenever she discussed these fears. Although her beliefs sounded almost psy-
chotic, Ms. U’s awareness that her beliefs were irrational (although she insisted
that she felt better when she remained in the chair) coupled with her general anxi-
ety and nervousness around a number of related issues supported the conclusion
 Pessin et al. / DISTRESS NEAR THE END OF LIFE 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 help-
ing her learn relaxation and guided imagery techniques, that Ms. U resumed sleep-
ing in her bed.

This vignette highlights several important distinctions with regard to the

diagnosis, etiology, and treatment of anxiety in the terminally ill. Because of her
unusual presentation, Ms. U’s anxiety might have been mistaken for depression,
psychosis, or both rather than an anxiety disorder. These alternative diagnoses
would have led to markedly different and probably less effective interventions.
Furthermore, many clinicians rely exclusively on pharmacological interven-
tions to manage anxiety that although rapid and relatively effective for many
patients, often provide incomplete symptom relief. Psychotherapeutic interven-
tions for anxiety are often useful in palliative care settings, particularly because
they avoid potentially complex side effects or drug interactions.

DELIRIUM NEAR THE END OF LIFE

Cognitive impairments such as disorientation, concentration problems, or

memory disturbance are frequently seen in patients with advanced illness. In
fact, the prevalence of delirium, the most common source of cognitive impair-
ment among the medically ill, has been estimated to be as high as 80% or more
during the final weeks of life (Breitbart & Cohen, 2000). Delirium is a particu-
larly important event in end-of-life care both because of the high frequency with
which delirium occurs as well as because the symptoms and behavioral changes
associated with delirium are often mistakenly attributed to emotional causes.
The essential feature of a delirium is a disturbance of consciousness that is
accompanied by a change in cognition that cannot be explained by an existing or
emerging dementia (i.e., a chronic, progressive deterioration in cognitive func-
tioning). Both dementia and delirium have an organic etiology, although delir-
ium is often reversible as the cognitive changes remit after the underlying cause
has been resolved, whereas dementia is usually not (Stiefel & Holland, 1991).
Unfortunately, identifying the precise cause or causes of a delirium can often be
difficult, and in many cases, several possible etiologies can be identified. Fur-
thermore, the presence of dementia may hinder the diagnosis of delirium
because clinicians may mistakenly attribute new cognitive impairments to the
known dementia rather than considering the possibility that a delirium is super-
imposed on the existing dementia. In fact, the presence of dementia may even
increase the likelihood of delirium (Elie, Cole, Primeau, & Bellavance, 1998).
366 AMERICAN BEHAVIORAL SCIENTIST

The clinical presentation of delirium often includes behavioral and affective

symptoms (e.g., motor restlessness, sleep disturbances, anxiety, labile or
extreme mood states, and irritability) and is characterized by a rapidly fluctuat-
ing course, altered (either increased or decreased) psychomotor activity, a dis-
turbance of the sleep-wake cycle, altered perceptions (misperceptions, illusions,
or hallucinations), confused or disorganized thinking, and incoherent speech
(Breitbart & Cohen, 2000). Based on the nature of the arousal and psychomotor
activity changes, delirium can be classified as either hyperactive (agitated or
hyperalert) or hypoactive (lethargic or hypoalert) subtypes, although at times the
presentation may be more mixed (Trzepacz, Teague, & Lipowski, 1985).
Because symptoms of delirium can often mimic those of psychotic disorders
(e.g., hallucinations and disorganized thinking), mood disorders (e.g., sadness
or euphoria, irritability, and psychomotor retardation), and anxiety disorders
(e.g., anxious mood and psychomotor agitation), many delirious patients are ini-
tially assumed to be suffering from a psychological disorder rather than a cogni-
tive disorder caused by an organic etiology. Furthermore, the fluctuating nature
of delirium complicates the assessment process because patients may not be
actively delirious when the clinician arrives to evaluate them but become
increasingly disorganized as the evening progresses (Breitbart & Cohen, 2000).

ASSESSMENT OF DELIRIUM

Because treating the underlying cause of delirium is essential to reversing the

cognitive impairment, assessment of the delirious patient must necessarily
involve a careful review of the possible etiological factors, much of which may
be beyond the expertise of the typical psychologist or other nonmedical mental
health professional. Nevertheless, any diagnostic evaluation in a severely ill
patient should include an assessment for evidence of sepsis, dehydration, or
major organic failure as well as medications that could be causing or contribut-
ing to the delirium (e.g., opioid analgesics and corticosteroids). Laboratory test-
ing may reveal metabolic abnormalities, such as hypercalcemia, hyponatremia,
hypoxia, or disseminated intravascular coagulation, any of which might contrib-
ute to or cause delirium. Imaging studies of the brain and assessment of the
cerebrospinal fluid may be appropriate in some instances, particularly to detect
central nervous system causes of delirium (e.g., tumor growth) (Breitbart &
Cohen, 2000).
Traditionally, a major focus of the clinical assessment of delirium has been to
identify delirious patients through the use of screening instruments. Only
recently have investigators developed instruments designed to improve diagnos-
tic precision. Delirium instruments can be grouped into the following three
broad categories: (a) tests that measure cognitive impairment in general, such as
the Mini-Mental State Exam (Folstein, Folstein, & McHugh, 1975); (b) delirium
diagnostic instruments based on DSM (American Psychiatric Association,
1994) or International Classification of Diseases criteria that are used to make a
 Pessin et al. / DISTRESS NEAR THE END OF LIFE 367

judgment as to the presence or absence of delirium, such as the Confusion-

Assessment 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 delirium-
specific 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

Ms. J, a 79-year-old, widowed, Caucasian woman, was referred for evaluation by

her physician. At the time of referral, Ms. J was hospitalized for palliative care
related to end-stage lung cancer. She had been admitted 3 days earlier for pain
management and had been started on intravenous morphine. The physician
reported that Ms. J had requested he “end it” for her because “I can’t take it any-
more.” The physician, concerned about her apparent depression, requested a men-
tal health consultation. After several minutes of questioning as to how she felt and
whether she was in any discomfort, Ms. J was asked whether she knew where she
was. She responded, “Of course, I’m on flight 362 to Chicago.” She explained that
she is terrified of flying and was concerned that the man who spoken to her earlier
(her physician) had hijacked the airplane. She indicated, “I would rather die now
than be held hostage in Cuba.” Further evaluation revealed that Ms. J had not slept
for the past 2 nights but was often sedated and lethargic during the afternoons.
After consulting with her physician, Ms. J was diagnosed with delirium resulting
from the recent increase in pain medication. Ms. J was subsequently switched to
an alternative analgesic, and her delirium appeared resolved within 48 hours.

This case highlights the importance of assessing for delirium as a routine

aspect of any mental health evaluation of a medically ill individual. Not only can
symptoms of delirium present as an expression of suicidal ideation (as described
earlier) but may be mistakenly treated with inappropriate psychotropic medica-
tions (e.g., antidepressants or anxiolytics) while the underlying medical etiol-
ogy remains unnoticed and untreated. Although some cases of delirium warrant
pharmacological intervention to manage the associated agitation, this is typi-
cally done with low doses of antipsychotic medication because anxiolytics may
actually exacerbate the behavioral problems associated with delirium (Breitbart
et al., 1996).
368 AMERICAN BEHAVIORAL SCIENTIST

Several features of delirium are useful indicators for distinguishing this dis-
order from other conditions such as depression, anxiety, or dementia. Particu-
larly in the context of advanced disease, a central indicator of delirium is the
rapid onset of cognitive changes because depression, dementia, and other possi-
ble 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., exces-
sive sedation interspersed with periods of agitation or hyperalertness), whereas
this symptom is typically absent from nonorganic psychiatric disorders
(Breitbart & Cohen, 2000).

SUICIDE, ASSISTED SUICIDE,

AND DESIRE FOR HASTENED DEATH

One of the more controversial aspects of end-of-life care involves patient

assertions of a desire for a hastened death. When not simply a manifestation of
confusion (as described earlier), understanding why a patient with a terminal ill-
ness might wish to hasten her or his death has crucial implications for both pal-
liative care practices as well as legal and health care policy. Despite legal prohi-
bitions against assisted suicide (with the exception of Oregon, where legalized
assisted suicide began in late 1997), a substantial number of patients think about
and discuss the possibility of hastening their death (Breitbart et al., 1998). More-
over, expressions of an interest in hastened death often prompt a referral for
mental health evaluation. However, distinguishing thoughts, desires, and inten-
tions is an important element of mental health intervention in these cases.
Occasional thoughts of suicide occur quite frequently among the terminally
ill and may actually serve as a coping mechanism for many patients, allowing
them to express the magnitude of their distress (Rosenfeld et al., 2000). Like-
wise, consideration of assisted suicide and euthanasia is not uncommon among
terminally ill individuals, although actual requests for a hastened death are far
less common (Emanuel, Fairclough, Daniels, & Clarridge, 1996; Rosenfeld,
2000). Although many writers argue that suicidal ideation and interest in
assisted suicide represent distinct phenomena, there is little empirical evidence
for distinguishing the two. In fact, several writers have proposed the “desire for
hastened death” as a unifying construct underlying requests for assisted suicide,
euthanasia, and suicidal thoughts that do not involve a clinician (Rosenfeld
et al., 1999). More important, in a palliative care setting, both expressions of sui-
cidal ideation as well as requests for assisted suicide/euthanasia are likely to be
met with similar responses: a request for mental health consultation. Hence, for
the purposes of this review, we discuss these issues in tandem under the broad
 Pessin et al. / DISTRESS NEAR THE END OF LIFE 369

heading of “desire for hastened death,” with the acknowledgement that some
important differences may exist (and a thorough review of suicide, assisted sui-
cide, 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 patient’s
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-of-
life 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 poten-
tially suicidal patient should certainly include an assessment of physical and
psychological symptoms that might be contributing to the patient’s distress,
clinical interventions should also target patient’s 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 psycho-
logical 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 AMERICAN BEHAVIORAL SCIENTIST

professionals become increasingly aware of the importance of mental health

issues near the end of life, mental health clinicians must become more comfort-
able and skilled at working in these settings. A central component of adequate
end-of-life mental health care involves accurate diagnosis and assessment of the
many psychiatric disorders that are likely to emerge. As evidenced here, the task
of diagnosis and assessment with terminally ill patients is quite complex, partic-
ularly given the confounding presence of physical and emotional symptoms that
can have multiple origins and differing diagnostic significance. Although this
review is not intended to be exhaustive or substitute for clinical training and
supervision, it may help to elucidate many of the challenges that face mental
health clinicians who work in palliative care settings. Only with an aggressive
and multidisciplinary approach can we hope to adequately identify and address
the many psychological needs and symptoms that accompany the dying process.

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