Psychologic Issues in Palliative Care

Anesthesiology Clin N Am 24 (2006) 61 – 80

Psychologic Issues in Palliative Care Christopher A. Gibson, PhD, Wendy Lichtenthal, MA, Amy Berg, MA, William Breitbart, MDT Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, 1275 York Avenue, New York, NY 10021, USA

As medical science progresses and the life spans of patients with serious illnesses increase, the process that leads to death is becoming more feared than death itself. This fear is particularly intense in technologically advanced cultures with access to advanced medical care. The lives of patients who previously would have died rapidly are now often greatly extended. As a result, images of suffering, such as dying in isolation and experiencing great pain, often are at the forefront of concerns about those who are struggling with terminal illnesses. The prompt recognition and effective treatment of psychologic issues are critically important to the wellbeing of our patients with terminal illnesses. Managing the psychiatric complications (such as anxiety, depression, suicide, and organic mental disorders) and difficult psychosocial issues (such as bereavement, loss, and family dysfunction) facing persons with terminal illness and their families can be trying, even for the most skilled practitioners. For these reasons, a multidisciplinary approach to the management of the terminally ill patient is essential. A psychologist or psychiatrist plays a vital role as a member of such a treatment team. This role includes the assessment and treatment of the psychologic complications of terminal illness and the application of psychologic and psychiatric techniques to the management of physical symptoms. This article provides medical practitioners with an overview of the issues and symptoms common to patients who have terminal illnesses, to help them work effectively with their mental health colleagues.

T Corresponding author. E-mail address: [email protected] (W. Breitbart). 0889-8537/06/$ – see front matter D 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.atc.2005.12.001 anesthesiology.theclinics.com

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Frequency of psychiatric disorders in the terminally ill People who have advanced disease face many stressors during the course of their illnesses, including fears of a prolonged and painful death, disability, disfigurement, and dependency on others for care and support. Although such concerns are relatively universal, the level of resultant psychologic distress is variable and dependent on numerous factors, such as personality, coping ability, social support, and medical issues. The expression of such distress in the form of a psychiatric disorder is also relative. Excellent baseline data on the prevalence of psychiatric disorders in seriously physically ill people are provided by a study conducted by the Psychosocial Collaborative Oncology Group [1], which evaluated the prevalence of psychiatric disorders in 215 cancer patients (ambulatory or hospitalized, with a wide range of cancer diagnoses and stages of disease) receiving treatment in three major cancer centers. Roughly half (53%) of the patients evaluated were adjusting normally to the stresses of their illnesses, and had no diagnosable psychiatric disorders. However, 47% presented with a diagnosable psychiatric disorder. Of the 47% who had psychiatric disorders, 68% had adjustment disorders with depressed or anxious moods; 13% had major depression; and 8% had an organic mental disorder (delirium). People who have advanced cancer are particularly vulnerable to the development of such conditions [2–5]. The incidence of attendant pain, depression, and delirium increases with higher levels of physical debilitation and advanced illness [6–8]. Approximately 25% of all individuals who have cancer experience severe depressive symptoms, with the prevalence increasing to 77% in those with advanced illness [6]. The prevalence of organic mental disorders (delirium) among people who have cancer who require psychiatric consultation has been found to range from 25% to 40% and as high as 85% during the terminal stages of illness [9]. Narcotic analgesics commonly cause confusional states, particularly in the elderly and terminally ill patients [10]. People who have cancer with pain are twice as likely to develop a psychiatric complication of cancer than similar persons without pain. Of those who received a psychiatric diagnosis, 39% reported significant pain, whereas only 19% of individuals without a psychiatric diagnosis had significant pain [1]. The psychiatric diagnoses of the people who have pain were predominantly adjustment disorder with depressed or mixed mood (69%) and major depression (15%). Persons struggling with AIDS also are prone to develop psychiatric disorders. There have been several reports of psychiatric diagnoses seen in people who have AIDS who were hospitalized and thus more seriously ill. Karina and colleagues [11] reported that, of 357 patients hospitalized with AIDS, 49 (14%) had at least one psychiatric diagnosis. An important finding from this study was that these patients were hospitalized an average of 60 days longer than AIDS patients who did not have such psychiatric illnesses. Differences in purely medical factors did not account for these patients’ longer hospitalizations. Perry and Tross [12] reported on the prevalence of psychiatric disorders seen in medically hospitalized AIDS patients. They found that 65% of patients were diagnosed with an organic

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mental disorder, and 17% were diagnosed with major depression. The organic mental disorders seen were predominantly AIDS dementia complex and delirium, often in combination. As medical technology and the resultant efficacy of treatment increase, people are increasingly treated in outpatient settings. However, their psychosocial concerns and difficulties do not necessarily decrease. Tross and Hirsch [13] reported on the prevalence of psychiatric disorders in an ambulatory sample of 279 persons who had AIDS spectrum disorders. The study included asymptomatic gay men, gay men with AIDS-related complex (ARC), and gay men with AIDS. Men who had ARC showed the greatest distress and frequency of psychiatric disorders. Seventy-five percent of the men who had ARC, 50% of the persons who had AIDS, and 40% of the asymptomatic gay men were diagnosed as having a psychiatric disorder. The most common psychiatric diagnosis was adjustment disorder, which was seen in 66% of the persons who had AIDS and more than 50% of those who had ARC. Depression was present in 25% of the entire study population. People who have AIDS, therefore, have comparable if not higher levels of psychiatric distress than persons with cancer. What is striking is that levels of distress are quite high in asymptomatic gay men and highest in those who have ARC. Presumably, these are the ‘‘worried well’’ subjects for whom waiting for a diagnosis of AIDS is more distressing than finally knowing.

Anxiety in the patient with terminal illness When confronted with the fear and uncertainty associated with physical illness, individuals may demonstrate a multifarious blend of physiologic as well as psychologic symptoms, creating a challenge in the detection and treatment of anxiety [14]. Complaints of tension or restlessness or demonstrations of jitteriness, autonomic hyperactivity, vigilance, insomnia, distractibility, shortness of breath, numbness, apprehension, worry, or rumination are common in individuals who have anxiety. The physical or somatic manifestations of anxiety often overshadow and are more present than the psychologic or cognitive ones [15]. The clinician must use these symptoms as cues to explore the person’s psychologic frame of mind, frequently one plagued with fear, worry, or apprehension. The universal postulation that an individual will consequentially and inevitably develop elevated anxiety levels in the terminal phase of illness is not helpful, nor is it accurate for diagnostic and treatment purposes [16]. Similar to the treatment of conventional anxiety disorders [17–20], the individual’s subjective level of distress is the primary impetus for intervention in deciding whether to treat anxiety during the terminal phase of illness. Additional factors are problematic behavior such as noncompliance because of anxiety, family and staff reactions to the person’s distress, and the balancing of the treatment risks and benefits [21]. Symptoms of anxiety in persons who have advanced illness may present in various ways. Anxiety may be encountered as a component of an adjustment

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disorder, a panic disorder, a generalized anxiety disorder, phobia, or agitated depression. Furthermore, symptoms of anxiety in the terminally ill person with cancer are most likely to arise from some medical complication of the illness or treatment, such as organic anxiety disorder, delirium, or other organic mental disorders [15,22,23]. Some conditions often are disguised as anxiety, such as hypoxia, sepsis, poorly controlled pain, and adverse drug reactions, such as akathisia (restlessness), or withdrawal states. Anxiety in the dying person can represent a pulmonary embolism, impending cardiac or respiratory arrest, an electrolyte imbalance, or dehydration [24]. It is important to remember that, despite the fact that anxiety in the terminally ill frequently results from medical complications, psychologic factors related to dying and death or existential issues often play a role in anxiety as well, especially in those who are alert and lucid [15]. Apprehension surrounding the isolation and separation of death is commonplace. The notion of being confined and buried in a coffin may heighten fear levels in claustrophobic individuals. These issues may cause distress to professionals struggling with appropriate words of consolation; however, eliciting these concerns, listening empathetically to them, and enlisting pastoral involvement when appropriate, should not be evaded. Often all that is required in these situations are the clinician’s basic listening and reflective skills, which, nevertheless, may be tested to their limits at times. The specific treatment of anxiety in terminally ill people generally is contingent on cause, presentation, and setting. Interventions for anxiety and distress from a nonpharmacologic perspective include the use of supportive psychotherapy and behavioral interventions, either alone or in combination. Brief supportive psychotherapy often is valuable in dealing with both crisis-related issues as well as existential issues confronted by the terminally ill [21]. Psychotherapeutic interventions are beneficial to both the client and family, particularly because the person who has advanced illness becomes increasingly debilitated and less able to interact with others. The emotional needs of clients and families may be facilitated during the terminal phase of illness. Mental health professionals can assist in this process by seeing that continuous, updated information regarding the disease status and treatment options are made available. It is vital that this information be delivered repeatedly and with an appropriate sensitivity to what the patient is currently prepared to hear and able to absorb. Knowing that the medical staff has done everything possible for their loved one is of fundamental importance to family members. The goals of psychotherapy are to establish a bond that decreases the sense of isolation experienced with terminal illness; to help the client face death with a sense of self-worth; to correct misconceptions about the past and present; to integrate the present illness into a continuum of life experiences; and to explore issues of separation and loss as well as the unknown that lie ahead [25]. The therapist should emphasize past strengths and support previously successful ways of coping. In doing so, the person is better equipped to mobilize inner resources, modify plans for the future, and perhaps even accept the inevitability of death.

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In the terminal phase of illness, vital importance should be placed on setting the tone for the subsequent bereavement course. Mental health professionals must extend their supportive stance to include both the client and family. Anticipatory bereavement is a common experience that allows dying persons, loved ones, and health care providers the opportunity to prepare mentally for the impending loss of life. The encouragement to reconcile differences, to extend important final communications, and to reaffirm feelings and wishes during this period should be provided to clients and their family members. It is during the terminal phase of illness that we have the greatest opportunity to affect the process of the adaptation to loss [26]. Contrary to the assumptions of many clinicians, most people who have advanced illness are still appropriate candidates for the practical application of behavioral techniques, despite physical debilitation. Relaxation, guided imagery, and hypnosis may help not only to reduce anxiety but also, in effect, to increase the patient’s sense of control. In assessing the efficacy of such interventions for a terminally ill person, the clinician should take into account their client’s mental clarity. A person’s ability to focus and pay attention may be hindered drastically by confusional states. In turn, the usefulness of these techniques may be limited [2]. Occasionally, even mildly cognitively impaired individuals may be included if the behavioral techniques are modified appropriately. Such compensations might involve the therapist taking a more active role by orienting the client, creating a safe and secure environment, and evoking a conditioned response to the therapist’s voice or presence. A relaxation exercise combined with some distraction or imagery technique may be a standard behavioral intervention for a terminally ill person who has anxiety. Typically, the individual is first taught to relax with passive breathing, accompanied either by passive or active muscle relaxation. Once in such a relaxed state, the client is taught a pleasant, distracting imagery exercise. In a randomized study comparing the use of a relaxation technique with a benzodiazepine in the treatment of anxiety in cancer patients, both treatments were demonstrated to be quite effective for mild to moderate degrees of anxiety or distress. The drug intervention (alprazolam) was more effective for greater levels of distress or anxiety and had a more rapid onset of beneficial effect [27]. As with the simultaneous use of medications and behavioral techniques for anxiety disorders in nonphysically ill individuals, relaxation techniques can be prescribed concurrently with anxiolytic medications in highly anxious people who have cancer and can be expected to have good efficacy.

Depression in people who have advanced illness Studies have found that approximately 10% to 25% of individuals who have cancer experience depression, and rates appear to be higher among patients who have greater disability, pain, and more advanced disease [6,9,28]. Individuals who have some types of cancer are more prone to depression than those who have

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other types; for example, rates of depression are higher among pancreatic cancer patients than among patients who have other intra-abdominal malignancies [29,30]. Because depressive symptoms are similar to symptoms of several illnessrelated organic syndromes, it is important that practitioners carefully rule out alternative causes [31], such as chemotherapeutic agents [32–35], corticosteroids [36], central nervous system complications [37], and whole-brain radiation [38]. Diagnosing major depressive disorder among the terminally ill involves the clinician placing a greater emphasis on psychologic or cognitive mood symptoms (worthlessness, hopelessness, excessive guilt, and suicidal ideation), rather than the neurovegetative or somatic signs and symptoms that may reflect the patient’s physical disease [4,28,39]. It is important to bear in mind that, as death approaches, it is appropriate for patients to experience some depression and sadness because of impending losses. Individuals may be grieving for their own life, health, and loved ones, as well as their personal freedom and autonomy. Thus, some sense of hopelessness is expected when cure and recovery from illness are no longer possible. Practitioners must explore feelings of hopelessness, worthlessness, or suicidal ideation in detail to determine whether they are of clinical significance. When hopelessness appears to be pervasive and is accompanied by a sense of despair or despondency, there is a greater likelihood that it reflects a symptom of depression [9]. Another common sentiment among individuals who have terminal illness is that they are an emotional and practical burden on their families. If this feeling is accompanied by beliefs that the individual’s life never had worth or that he or she is being punished for past wrongdoings, then it is more likely to be symptomatic of major depressive disorder. Optimal care for managing depression among advanced cancer patients typically involves a combination approach, including psychotherapy and pharmacologic treatment [9], which is central to the care of patients who have both a serious physical illness and severe symptoms of depression [9]. In addition, individual and group psychologic interventions have been shown to decrease distress and symptoms of depression among cancer patients [21,40,41]. Specifically, cognitive-behavioral techniques, such as relaxation and distraction with pleasant imagery, are effective in treating depressive symptoms among patients who have mild to moderate levels of depression [27]. The use of supportive psychotherapy similarly is helpful with dying individuals. This therapy may involve active listening and supportive verbal interventions as well as some intermittent interpretation [42]. Because the psychotherapist may be uniquely comfortable conversing about issues related to the patient’s impending death, he or she should encourage open questions and remain responsive. Practitioners also should permit patients to discuss their life experiences more broadly, rather than narrowly focusing on the dying process. Spiritual well being also may affect levels of despair at the end of life [43]. Thus, pastoral counseling may be helpful, and a chaplain’s service should be offered to the patient and family members, if it is available. Although hope for a cure diminishes for the terminally ill, it is possible for patients to maintain hope for better symptom control and an increased quality of

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life. For many individuals, finding meaning in each day helps them to sustain hope. It can be challenging, however, for clinicians to assist patients with finding meaning in their lives. Thus, the present authors have developed both an individual and group meaning-centered psychotherapy for people who have cancer [25,44]. These interventions have been tested in a series of randomized controlled trials to determine their feasibility and efficacy in improving quality of life. Preliminary analyses suggest that meaning-centered psychotherapy affects spiritual well being and end-of-life despair (hopelessness and the desire for hastened death), although depression and anxiety were somewhat less responsive. Notably, the benefits may continue and grow after the intervention has concluded, as revealed in an analysis of 2-month follow-up data. Although they are preliminary, these findings suggest that interventions designed to enhance meaning and spirituality show promise and that research on their efficacy should continue [45].

Suicide among terminally ill individuals As in the general population, depressive symptoms play a significant role in suicidality among terminally ill patients. Individuals who have major depressive disorder are 25 times more likely to commit suicide than the general population, and half of all suicides involve depressive symptoms [46–48]. Among cancer patients specifically, the prevalence of depressive symptoms is estimated to be approximately 25%, and studies have reported that approximately 6% of individuals meet Diagnostic and Statistical Manual of Mental Disorders, third edition (DSM-III) diagnostic criteria for major depression [1,6,28]. The prevalence of severe depression increases to 77% among advanced cancer patients and increases as the physical illness becomes more incapacitating [6]. Preferences for life-sustaining medical therapy are influenced frequently by depressive symptoms. Consequently, the treatment of depression can affect these preferences. In a study of elderly patients with depression, Ganzini and colleagues [49] have found that the treatment of depressive symptoms is associated with an increase in the desire for life-sustaining medical therapies among patients who had greater baseline levels of severe depression and hopelessness and who were more likely to overestimate the risks and underestimate the benefits of treatment. The authors suggest that clinicians encourage severely depressed patients, and especially those who report hopelessness, to defer advance treatment directives until after attempts to decrease depressive symptoms are made. Interventions for depression may have less of an impact among patients who are mildly or moderately depressed, but it is important to discourage those who are severely depressed to defer decisions about life-sustaining therapy until after their depressive symptoms decrease. The risk of suicide increases among individuals who have terminal disease, perhaps because advanced illness frequently is accompanied by greater pain, depressive symptoms, and delirium. Box 1 presents factors associated with

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Box 1. Factors associated with increased risk of suicide in patients who have terminal illness Advanced illness: poor prognosis Control: helplessness Delirium: disinhibition Depression: hopelessness Fatigue: exhaustion Lack of social support: social isolation Pain: suffering aspects Preexisting psychopathology Substance and alcohol abuse Suicide history: family history

increased risk of suicide in people who have advanced disease [50,51]. It is common to find that suicidal hospitalized cancer patients meet the criteria for psychiatric disorders. The psychiatric consultation data from Memorial SloanKettering Cancer Center demonstrate the presence of major depression among 33% of suicidal cancer patients [50,51]. A review of these data also revealed that approximately 20% of suicidal patients suffered from a delirium, and 50% were diagnosed with an adjustment disorder, with both anxious and depressed features at the time of evaluation [50,51]. The risk of suicide may be greater among those who have a poorer prognosis. A study of cancer patients in Sweden has found that suicide risk increased among those who were expected to die within a matter of months [52]. Forty-five of the 88 patients who committed suicide had a poor prognosis, whereas 14 patients had an uncertain prognosis [52]. Studies also have shown that suicide risk is higher among those who experience increased, uncontrolled pain. This becomes particularly important as the disease advances and the likelihood of pain increases. Numerous studies have demonstrated that patients who have severe pain that is inadequately controlled and difficult to tolerate are more likely to commit suicide [52,53]. One of the strongest predictors of completed suicide is hopelessness [54–56]. It is common for cancer patients who commit suicide to have experienced hopelessness as a result of their advanced disease and poor prognosis. Among Scandinavian cancer patients, the risk of suicide was greatest when there was no offer of further treatment or contact with the health care system [52,57]. The absence of contact can leave patients with a sense of isolation and abandonment that plays a significant role in the onset of hopelessness. One major risk factor for impulsive suicide attempts, especially among hospitalized patients, may be delirium. Although prior research has indicated that delirium may be protective against suicide [58], clinical experience suggests otherwise. This is an especially important consideration because 25% to 40% of

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cancer patients experience organic mental disorders that require psychiatric consultation [8]. The prevalence increases to 85% during the terminal stages of illness [8]. In the present authors’ experience, cancer patients who experience a greater loss of control and an increased sense of helplessness are more vulnerable to suicidality. Some individuals may feel the need to be in control of how they live and die, but their sense of control may be compromised by the symptoms related to cancer and its treatment. Individuals who have a need to control the most detailed aspects of their care may be more likely to commit suicide than those who are more accepting and adaptable [58]. Advanced cancer frequently results in a sense of helplessness, even among individuals who are not typically controlling, because of the vast potential impairments, such as the loss of mobility, paraplegia, loss of bowel and bladder function, amputation, aphonia, sensory loss, and the inability to eat or swallow. Patients often are distressed by the sense that they are losing control of their minds, and this sense may be heightened when they experience states of confusion or are sedated by medications. These deficits, particularly among individuals who have related psychologic distress and problematic social support, may be associated with an increased risk of suicide. For many patients, cancer becomes a chronic illness. Prolonged survival frequently results in greater numbers of hospitalizations, complications, and expense. Often it is difficult to manage symptoms, and the process of dying may therefore be extended and trying for patients and their families. This sometimes results in the withdrawal of family and health care providers from the patient. For suicidal patients, this withdrawal heightens their sense of isolation and abandonment. A strong social support system, therefore, is an important external control of suicidal behavior and may significantly decrease the risk of suicide.

Frequency of suicidal ideation Suicidal ideation is not uncommon among advanced cancer patients, permitting patients to envision a way to obtain relief from their severe discomfort. Thoughts of suicide related to the notion that ‘‘if it gets too bad, I always have a way out’’ are expressed frequently by patients to those with whom they have developed a trusting and safe relationship. Some recent studies suggest, however, that persistent suicidal ideation is less common among cancer patients, unless they are significantly depressed. In a study of 200 terminally patients in a palliative care setting, Chochinov and colleagues [59] have found that 44.5% of patients reported at least a fleeting desire to die but that these thoughts did not reflect a persistent or committed desire to die. A more explicit and sustained desire for death, however, was reported by 8.5% of patients. Of the 17 patients who reported this persistent desire for death, 10 (58.8%) patients received a diagnosis of depression, whereas only 7.7% of patients who did not report a strong desire were clinically depressed. Patients who experienced an increased desire for death reported significantly greater pain and less social support than

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those patients who did not have a desire death. It also is important to consider the role of the practitioner in the intensity of a patient’s desire for hastened death because one study found that clinician-related factors (eg, clinicians’ perceptions of lower optimism and greater emotional suffering among patients and their willingness to assist with hastened death) were associated with a stronger wish for hastened death among patients [60]. Breitbart [50] has reported that 8.6% of psychiatric consultations at Memorial Hospital were evaluations for suicide risk and that these typically were requests by staff members to whom patients expressed their suicidal thoughts. In another study at Memorial Hospital, 17% of the 185 cancer patients who had pain reported suicidal ideation [51]. However, this may be an underestimate because suicidal thoughts may be more likely to be revealed once a trusting and stable physician–patient relationship has been established.

Management of the suicidal, terminally ill person The assessment of suicide risk and appropriate intervention are critical. Early and comprehensive psychiatric involvement with high-risk individuals often can avert suicide in the cancer setting [61]. A careful evaluation includes a search for the meaning of suicidal thoughts as well as an exploration of the seriousness of the risk. The clinician’s ability to establish rapport and elicit a client’s thoughts is essential as he or she assesses the history, degree of intent, and quality of internal and external controls. One must listen sympathetically and not appear critical or state that such thoughts are inappropriate. Allowing the client to discuss suicidal thoughts often decreases the risk of suicide. The myth that asking about suicidal thoughts ‘‘puts the idea in their head’’ is one that should be dispelled, especially in cancer patients [62]. Clients often reconsider and reject the idea of suicide when the physician acknowledges the legitimacy of their option and the need to retain a sense of control over aspects of their death. The suicide vulnerability factors (see Box 1) should be used as a guide to evaluation and management. Once the setting has been made secure, the assessment of the relevant mental status and adequacy of pain control can begin. Analgesics, neuroleptics, or antidepressant drugs should be used when they are appropriate to treat agitation, psychosis, major depression, or pain. Underlying causes of delirium or pain should be addressed specifically when possible. The initiation of a crisis intervention-oriented psychotherapeutic approach, mobilizing as much of the person’s support system as possible, is important. A close family member or friend should be involved to support the person, provide information, and assist in treatment planning. Psychiatric hospitalization can sometimes be helpful but is usually not desirable for the terminally ill person. Thus, the medical hospital or home is the setting in which management most often takes place. Although it is appropriate to intervene when medical or psychiatric factors are clearly the driving force in a cancer suicide, there are circumstances when usurping control from the individual and family with overly aggressive inter-

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vention may be less helpful [63]. This is most evident in those who have advanced illness, for whom comfort and symptom control are the primary concerns. The goal of the intervention should not be to prevent suicide at all cost but to prevent suicide that is driven by desperation. Prolonged suffering caused by poorly controlled symptoms leads to such desperation, and it is the consultant’s role to provide effective management of such problems as an alternative to suicide in the terminally ill individual.

Cognitive disorders in the terminally ill Cognitive failure is, unfortunately, all too common in people who have advanced illness. The DSM-IV [64] divides Cognitive Disorders into the subcategories of: (1) delirium, dementia, amnestic, and other cognitive disorders; (2) mental disorders caused by a general medical condition (including mood disorder, anxiety disorder, and personality change resulting from a general medical condition); and (3) substance-related disorders. Although virtually all of these mental syndromes can be seen in the person who has advanced cancer, the most common include delirium, dementia, and mood and anxiety disorders caused by a general medical condition. Lipowski [65] has divided organic mental disorders into those that are characterized by general cognitive impairment (ie, delirium and dementia) and those in which cognitive impairment is selective or limited (ie, amnesic disorder, organic hallucinosis, organic mood disorder, and other disorders). With organic mental disorders, in which cognitive impairment is selective, limited, or relatively intact, the more prominent symptoms tend to consist of anxiety, mood disturbance, delusions, hallucinations, or personality change. For example, the person with mood disturbance meeting criteria for major depression, who is severely hypothyroid or on high-dose corticosteroids, is diagnosed most accurately as having a mood disorder caused by a general medical condition or substance-induced mood disorder, respectively (particularly if organic factors are judged to be the primary cause related to the mood disturbance).

Delirium and dementia Despite knowing very little about the neuropathogenesis of delirium, its symptoms suggest that it is a dysfunction of multiple regions of the brain [66]. Delirium has been described as a global, cerebral dysfunction of nonspecific causes, characterized by concurrent disturbances of level of consciousness, attention, thinking, perception, memory, psychomotor behavior, emotion, and the sleep-wake cycle. Disorientation, fluctuation, or waxing and waning of these symptoms as well as the acute or abrupt onset of such disturbances are other critical features of delirium. Delirium, in contrast to dementia, is conceptualized as a reversible process. Reversibility of the process of delirium often is possible even in the individual who has advanced illness; however, it may not be re-

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versible in the last 24 to 48 hours of life [67], most likely because irreversible processes such as multiple organ failure are occurring in the final hours of life. Delirium occurring in these last hours of life often is referred to as ‘‘terminal restlessness’’ or ‘‘terminal agitation’’ in the palliative care literature [67]. At times, it is difficult to differentiate delirium from dementia because they frequently share common clinical features such as impaired memory, thinking, and judgment and disorientation. Dementia appears in relatively alert individuals who have little or no clouding of consciousness. The temporal onset of symptoms in dementia is more subacute or chronically progressive, and the patient’s sleepwake cycle seems less impaired. Most prominent in dementia are difficulties in short- and long-term memory, impaired judgment and abstract thinking, and disturbed higher cortical functions (such as aphasia and apraxia). Occasionally, delirium is encountered superimposed on an underlying dementia, such as in the case of an elderly person or an individual who has a paraneoplastic syndrome. Delirium is the psychiatric disorder most frequently cited in terminal cancer [68]. The present authors have found delirium in 26% to 46% of cancer patients admitted to a hospice or hospital. Massie and colleagues [8] found delirium in more than 75% of terminally ill cancer patients they studied. Delirium can be either the direct result of the effects of cancer on the central nervous system (CNS) or the indirect CNS effects of the disease or treatments (medications, electrolyte imbalance, failure of a vital organ or system, infection, vascular complications, and preexisting cognitive impairment or dementia). Early symptoms of delirium can be misdiagnosed as anxiety, anger, depression, or psychosis. In any person showing acute onset of agitation, impaired cognitive function, altered attention span, or a fluctuating level of consciousness, a diagnosis of delirium should be considered [65]. Delirium is distressing not only to the patient but to caregivers and medical staff as well. Breitbart and colleagues [69] studied the experience of delirium in hospitalized cancer patients, their caregivers, and their nurses. Results indicate that the presence of delusions during the delirious episode was the strongest predictor of patient distress. In contrast, the severity of illness was the strongest predictor of caregiver distress, whereas delirium severity and the presence of perceptual disturbance were the strongest predictors for the nursing staff. This study also demonstrates the impact of delirium on those around the patient, in that, of these three groups, caregivers were found to be the most distressed by the experience. This impact points to the importance of providing support to those around the patient during such episodes. A common error among medical and nursing staff is to conclude that a new psychologic symptom is functional, without completely ruling out all possible organic causes. Given the large numbers of drugs required by people who have cancer and their fragile physiologic state, even routinely ordered hypnotics are enough to tip people over into a state of delirium. Narcotic analgesics such as levorphanol, morphine sulfate, and meperidine are common causes of confusional states, particularly in elderly and terminally ill persons [70]. Chemotherapeutic agents known to cause delirium include methotrexate, fluorouracil,

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vincristine, vinblastine, bleomycin, carmustine (BCNU), cis-platinum, asparaginase, procarbazine, and the glucocorticosteroids [32–36,71]. Except for steroids, most people who receive these agents will not develop prominent CNS effects [72]. The spectrum of mental disturbances related to steroids includes minor mood lability, affective disorders (mania or depression), cognitive impairment (reversible dementia), and delirium (steroid psychosis). The incidence of these disorders ranges from 3% to 57% in noncancer populations, and they occur most commonly as the result of higher doses [73,74]. Symptoms usually develop within the first 2 weeks on steroids but can occur at any time, on any dose, even during the tapering phase [36]. A previous psychiatric illness or previous mental disturbance on steroids is not a good predictor of the susceptibility to or nature of the disturbance. These disorders are often rapidly reversible on reduction or discontinuation [36].

Management of delirium in terminally ill individuals A standard approach for managing delirium in the person who has cancer includes a search for underlying causes, correction of those factors, and management of the symptoms of delirium. When the physician is confronted with delirium in the terminally ill or dying person with cancer, a differential diagnosis always should be formulated; however, tests should be pursued only when a suspected factor can be identified easily and treated effectively. Interestingly, Bruera and colleagues [75] report that a cause was discovered in less than 50% of terminally ill patients with cognitive failure. In addition to seeking out and correcting the underlying cause for delirium, symptomatic and supportive therapies are important [65]. Fluid and electrolyte balance, nutrition, and vitamins may be helpful. Measures to help reduce anxiety and disorientation (ie, structure and familiarity) may include a quiet, well-lit room with familiar objects, a visible clock or calendar, and the presence of family. The judicious use of physical restraints, along with one-to-one nursing observation, may also be necessary and useful. Often, these supportive techniques alone are not effective, and symptomatic treatment with neuroleptic or sedative medications is necessary. Sedation may be necessary to relieve severe agitation or insomnia [65]. Haloperidol, a neuroleptic agent that is a potent dopamine blocker, is the drug of choice in the treatment of delirium in the medically ill [65,76–78]. In low doses, for example, 1 to 3 mg, haloperidol usually is effective in targeting agitation, paranoia, and fear. The use of neuroleptics in the management of delirium in the dying person remains controversial [76,79–81]. Some experts have argued that pharmacologic interventions with neuroleptics or benzodiazepines are inappropriate in the dying person. Delirium is viewed as a natural part of the dying process that should not be altered. Another rationale that is often raised is that these individuals are so close to death that aggressive treatment is unnecessary. Parenteral neuroleptics or sedatives may mistakenly be avoided because of exaggerated fears that they may

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hasten death through hypotension or respiratory depression. Many practitioners are unnecessarily pessimistic about the possible results of neuroleptic treatment for delirium. They argue that because the underlying pathophysiologic process often continues unabated (such as hepatic or renal failure), no improvement can be expected in the person’s mental status. There is concern that neuroleptics or sedatives may worsen a delirium by making the person more confused or sedated. The present author’s clinical experience in managing delirium in dying people who have cancer suggests that the use of neuroleptics in the management of agitation, paranoia, hallucinations, and altered sensorium is safe, effective, and appropriate. The management of delirium on a case-by-case basis seems wisest. The agitated, delirious dying person should probably be given neuroleptics to help restore calm. For example, Breitbart and colleagues [82] have found that olanzapine (Zyprexa) was effective in treating delirium in a sample of cancer patients but that the response to this medication was significantly better in patients suffering from hyperactive deliriums. A ‘‘wait and see’’ approach before using neuroleptics may be most appropriate with individuals who have a lethargic or somnolent presentation of delirium.

Treatment of concomitant physical symptoms Although the recognition and treatment of psychiatric disorders in the person with advanced illness is of importance, pain and other troublesome physical symptoms must also be treated aggressively in efforts aimed at the enhancement of the person’s quality of life [75]. The harmful influence of uncontrolled pain on an individual’s psychologic state is often intuitively understood and recognized. However, physical symptoms other than pain can go undetected and cause significant emotional distress. This distress often dissipates when effective management is instituted. Coyle and colleagues [83] report that 70% of terminally ill patients have three or more physical symptoms other than pain. This finding replicates those of earlier reports that have elucidated the multiple problems facing terminally ill individuals [84]. The psychologist or psychiatrist concerned with the assessment and treatment of affective and other syndromes in the terminally ill population must assess these symptoms. Following is a review of psychologic interventions that may be useful in the management of selected distressing symptoms.

Pain Behavioral interventions are effective in the management of acute procedures related to cancer pain and as an adjunct in the management of chronic cancer pain [40,85]. Hypnosis, biofeedback, and multicomponent cognitive-behavioral interventions have been used to provide comfort and minimize pain in adults, adolescents, and children who are undergoing bone marrow aspirations, spinal

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taps, and other painful procedures [86–88]. In chronic, acute, and mild to moderate residual cancer pain, cognitive-behavioral techniques are most effective when they are used as part of a multimodal, multidisciplinary approach [2]. Adequate medical assessment and management of cancer pain are essential. Relaxation techniques are used to help the person achieve a less agitated state. Once relaxed, the client who has pain can use a variety of imagery techniques, including pleasant distracting imagery, transformational imagery, and dissociative imagery [2]. Transformational imagery involves the imaginative alteration of either the painful sensation itself or the context of pain or both. People can imaginatively change a sensation of pain in their arm, for example, into a feeling of warmth or cold. They can use such imagery as ‘‘dipping your arm into a bucket of cold spring water’’ or ‘‘into a vat of warm honey.’’ Such techniques can also be used to alter the context of the pain. Dissociative imagery or dissociated somatization refers to the use of one’s imagination to disconnect or dissociate from the pain experience. These techniques can provide much needed respite from pain. Even short periods of relief from pain can break the vicious cycle that entraps many people who have cancer.

Anorexia and weight loss Persons who have cancer and their families find weight loss demoralizing, perplexing, and distressing. Weight loss and anorexia in terminally ill persons are complex problems that can arise from a number of sources. Although most often a variety of medical factors account for the anorexia and cachexia associated with terminal illness, psychologic and psychiatric factors may also play a role in the cause of anorexia and weight loss. Among the most frequent of such causes are anxiety, depression, and conditioned food aversions [89]. The treatment of anorexia and weight loss begins with the identification and correction of its reversible causes. For example, when uncontrolled opioidinduced nausea is identified as a key factor in a person’s inability to eat, adding an antiemetic may completely control the subsequent anorexia. Once specific causes have been ruled out or corrected, subsequent treatment relies on environmental manipulations [84]. The frequent administration of favorite foods, nutritional supplements, and fluids can reverse weight loss. Conditioned nausea and vomiting is often quite responsive to relaxation training and other behavioral techniques [90]. Even persons with advanced disease can use these interventions if their sensorium is clear, and they are capable of concentrating.

Asthenia Asthenia is defined as a generalized weakness and physical or mental fatigue. As many as 66% of people who have advanced cancer complain of weakness [91]. Unfortunately, a treatable cause of asthenia will be identified and corrected

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in only a minority of cases. The role of psychiatric factors in the presentation of asthenia in the dying person who has cancer is small in comparison with that of physical factors. The cause of asthenia more likely arises from some of the following causes: malnutrition, infection, profound anemia, metabolic abnormalities, and reactions to medication. Chemotherapeutic agents and radiotherapy are frequently used palliative therapies that can cause significant weakness. The psychologic and psychiatric treatment of people who have asthenia includes client and family education (especially to address the nonpsychologic nature of the problem in many cases). Some people who suffer with temporary asthenia from chemotherapy or radiotherapy believe their weakness is a sign of imminent death. An ongoing supportive relationship, which permits the person to express fears and concerns about the meaning of continued weakness and to address distorted ideas that they may have about its prognostic significance, is critically important [92].

Summary As the possibility of cure becomes increasingly remote in the care of the person with terminal illness, the focus of treatment shifts to symptom control and enhancement of quality of life. These patients are uniquely vulnerable to both physical and psychiatric complications. It is critical that clinicians working with such patients recognize the unique knowledge and skills of psychologists and psychiatrists and the contributions they can make to the care of terminally ill individuals. The role of the mental health professional in the care of terminally ill or dying persons is critical to both adequate symptom control and the integration of the physical, psychologic, and spiritual dimensions of human experience in the last weeks of life. The effective cooperation of the physician and these clinicians is essential to the proper care of the dying patient so that both the psychiatric and physical complications that plague terminally ill individuals can be controlled effectively.

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