End-of-life care in geriatric psychiatry

Clin Geriatr Med 19 (2003) 841 – 856

End-of-life care in geriatric psychiatry Elizabeth Goy, PhD*, Linda Ganzini, MD, MPH Portland Veterans Affairs Medical Center, Mental Health, P3MHDC, P.O. Box 1034, Portland, OR 97207, USA

Palliative care is the active total care of patients whose diseases are not responsive to curative treatments. Palliative care addresses physical, psychologic, social, and spiritual domains with the goal of improving quality of life for patients and their families [1]. In the United States, the most comprehensive palliative care is delivered in hospice. Patients become eligible for hospice at the point they have less than 6 months of life and are not receiving life-sustaining medical treatments. The Medicare hospice benefit covers physician services, in-home nursing services, home health aide services, and medications for patients; it also covers respite care and bereavement counseling for patients’ families [2]. In 2002, 25% of people who died in the United States (an estimated 600,000) received hospice services, though there are wide geographic variations [3]. More than 70% of patients were age 65 years or older. For dying patients not enrolled in hospice, many hospitals have developed palliative care consultation teams.

General psychologic considerations In a holistic approach, palliative care and the alleviation of suffering extends beyond physical symptom management and treatment of mental disorders to psychosocial issues. Patients at the end of life are faced with challenges to their autonomy and sense of control as a result of disability and debilitation. In a series of surveys of physicians and hospice nurses, fear of loss of control was the highest rated contributor to patients’ desire for physician-assisted suicide in the state of Oregon, where it has been legalized [4,5]. Related fears may include incontinence, becoming a financial or caregiving burden, and uncontrollable pain.

This work was supported by the Veterans Affairs Merit Review Program. * Corresponding author. E-mail address: [email protected] (E. Goy). 0749-0690/03/$ – see front matter. Published by Elsevier Inc. doi:10.1016/S0749-0690(03)00029-6

842

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

Interventions in palliative settings that maximize sense of control or improve adjustment to gradual losses have not been well studied to date. Another psychosocial concern involves the maintenance of dignity at the end of life. Patients who report loss of dignity as a concern are more likely to endorse feeling hopelessness, depression, and anxiety, and more likely to indicate desire for death and lower degree of satisfaction with life. Chochinov and colleagues [6] have drawn attention to the need to include ‘‘dignity-conserving care’’ as a standard of practice in the field of palliative care. Additional psychosocial issues that may arise in the final months of life include grief and adjustment to the prognosis and illnessrelated losses, the appropriateness of reviewing one’s life as a way of reaching acceptance, hopelessness, demoralization, withdrawal/apathy, existential and spiritual concerns about the meaning of life and death, purposefulness, closure, fear of disfigurement and changes in the body, loss of role in the family, and fear of abandonment [7 – 10].

Depression Establishing whether an older patient who is in the final months of life may be depressed is made uniquely challenging by the circumstances. Normal concerns of aging, particularly existential concerns about meaning and contribution, are embedded in the context of illness, disability, fatigue, reaction and adjustment to learning of a poor prognosis, loss of participation in active pursuits that may have been the principal source of pleasure during healthy years, and socialized coping styles that influence whether mood disturbance is recognized, reported, or remediated successfully. Estimates of the prevalence of depression during terminal illness range from 1% to more than 40%, depending on the illness of the study population and the diagnostic criteria used [11]. For patients with cancer, it is generally estimated that approximately 25% develop significant mood disturbance with approximately 10% developing major depressive disorder [12,13]. Depression continues to be under recognized and under treated in the geriatric population and among the terminally ill [14]. One explanation for the apparent under treatment of depression in this population is that diagnosis itself is problematic. The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) [15] offers strict diagnostic criteria for major depressive disorder requiring that depressed mood or loss of pleasure be present for a 2-week period, and at least five of the following symptoms: significant change in appetite and weight, disrupted sleep or hypersomnia, psychomotor agitation or retardation, fatigue or loss of energy, feelings of worthlessness or excessive guilt, reduced concentration, and recurrent thoughts of death or suicidal ideation. Medical illness alone could account for several of these additional symptoms, potentially leading to over diagnosis of depression. Conversely, clinicians might attribute these symptoms to medical causes alone and fail to consider the possibility of depression. Chochinov et al have shown that when psychologic symptoms are severe, despite

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

843

different methods for diagnosing depression (eg, replacing physical symptoms with psychologically-oriented criteria), the group identified as depressed is essentially the same [12]. Greater difficulty persists in recognizing depression accurately when psychologic symptoms are less severe. Some factors that may interfere with appropriate detection and treatment of depression in terminally ill older adults are also common in general medical populations. These include physician variables ranging from a too-narrow focus on the disease to difficulty accepting their own limitations in curative efforts. Older adults may be especially likely to minimize psychologic distress, given the apparent socialization of their age cohort to downplay complaints, and possible desire to avoid stigma from a diagnosis of depression. Patients may fail to prioritize depression as important enough to bring up in the medical encounter, especially if other physical symptoms are prominent [16]. Assessment of depression Brief single-item screening tools that correlate well with other measures of depression have been suggested for use in medical settings, including a visual analog scale [17] and the single question ‘‘Are you depressed?’’ [18]. In general, a response in the depressed direction warrants more thorough assessment of mood. It should be stressed, however, that these screens may fail to detect depression in patients who are reluctant to disclose their distress [19]. The Patient Health Questionnaire is a nine-item screen that evaluates each of the diagnostic criteria of depression [20]. It has demonstrated good sensitivity and specificity in general primary care settings but has not been validated for the palliative care population. The Hospital Anxiety and Depression Scale [21] is used frequently in palliative care practice and research settings. Some evidence suggests it may be a better measure of depression when illness is less severe; patients who are too ill or confused may have difficulty completing the 14-item scale [22]. The Beck Depression Inventory [23] and the Geriatric Depression Screen [24] can be used in palliative care settings, though neither was designed specifically for a medical population. Whenever screening measures are used, results indicating possible depression ideally should trigger more thorough interviewing focused on the diagnostic criteria. Treatment of depression in geriatric palliative care Psychotherapy can play a meaningful role in alleviating mild to moderate symptoms of depression during terminal illness by improving compliance with treatment, addressing the interplay between cognitive and physiologic functions, addressing feelings about the disease and prognosis, improving quality of life, and augmenting response to antidepressant medication [11,25,26]. The relative success of such interventions rests firmly on the quality of the therapeutic collaboration between provider and patient. Group and individual approaches typically focus on strengthening coping skills and providing a forum for working through emotional

844

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

responses to the disease [27]. Cognitive behavioral approaches help patients identify automatic thoughts that may interact negatively with disease symptoms and help develop alternative ways of thinking that reduce autonomic arousal and discomfort. At the same time, new skills, including relaxation, controlled breathing, and guided imagery are taught to increase the patient’s repertoire for coping [26]. The frailty of the older terminally ill patient may limit the appropriateness and effectiveness of psychotherapeutic intervention, and particularly when depression is severe, the best treatment likely is psychotherapy as an adjunct to medication, or medication alone [16]. Most terminally ill patients with a major depressive disorder should be started on an antidepressant medication. A plan that proposes a trial of psychotherapy before medication may deprive a patient of the chance to have their depression remit before death. The choice of antidepressant also is influenced by life expectancy. For patients with an expected life of greater than 2 months, selective serotonin reuptake inhibitors (SSRIs), such as paroxetine, sertraline, or citalopram are recommended. Because patients with a shortened life expectancy may not have an opportunity to respond to an SSRI, psychostimulants such as methylphenidate are recommended. Response to psychostimulants can be seen within 2 days, and side effects resulting in discontinuation are uncommon (10%) [28]. Psychostimulants augment opioid analgesia and diminish opioid sedation [29]. Concerns about abuse or dependence are, for the most part, irrelevant. Noncontrolled studies in cancer patients demonstrate response rates of 73% [28], but prospective randomized trials of psychostimulants are needed to verify their effectiveness in this population.

Anxiety Anxiety is not well studied in the geriatric palliative care population. Most of the current literature on anxiety at the end of life is based on studies of cancer patients. Estimates of the prevalence of anxiety in cancer patients range from 21% – 28% [30]. The demographic factors that characterize anxiety in the general population, including female gender, younger age group, and low socioeconomic status, are less prominent among cancer patients, especially as the disease progresses. Symptoms of anxiety may be grouped as cognitive – psychologic (including apprehension, fear of death or loss of control, thoughts of impending doom, foreboding, over generalizing and catastrophizing, difficulty concentrating, and difficulty sleeping) and somatic (including tachycardia, shortness of breath, diaphoresis, gastrointestinal upset, nausea, trembling, and dizziness) [31]. The spectrum of anxiety disorders includes phobia, panic disorders, generalized anxiety disorder, and post traumatic stress disorder. For those who are prone to anxiety, these disorders usually emerge earlier in life, but in some instances the first diagnosed episode is during palliative care [30]. In evaluating for anxiety, common possible medical causes such as pain, endocrine and metabolic abnormalities, medications, or substance withdrawal

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

845

should be considered. Anxiety can be a manifestation of delirium or depression. Anxiety interacts with dyspnea as a possible trigger and as a result of the sensation [32]. The anxiety response is also fairly readily conditioned; symptoms may emerge as an anticipatory response to repeated aversive treatment such as chemotherapy [33]. Assessment for anxiety in older patients is made principally by clinical interview. As with depression, completing written screens with multiple items can be arduous during terminal illness. For sturdier patients, the Hospital Anxiety and Depression Screen [21] and the Brief Symptom Inventory [34] are reasonable tools that can help confirm diagnostic impressions. The presence of anxiety can be distressing and disruptive to treatment; thus, even mild forms should be addressed. Combined psychotherapy (including cognitive –behavioral interventions) and medication interventions are ideal for patients who have the stamina and cognitive ability to engage in therapy. During palliative care, the focus of therapy shifts from traditional methods (eg, identifying the psychologic context of anxiety or developing insight) to teaching active management skills. The therapist serves as a supportive advocate. The repertoire of management skills includes progressive muscle relaxation, controlled respiration, and guided imagery. The presence of familiar nursing staff, reassurance that symptoms will be managed carefully, and visits from pastoral care for existential and spiritual concerns are also important contributors to patient well-being and anxiety management. Mild reactive anxiety might respond to therapy alone, but typically anxiolytic medications are used. Benzodiazepines are considered first-line treatment but frequently cause confusion and falls in older patients and can suppress respiration in patients with pulmonary disease or those on high doses of narcotics [30].

Delirium Delirium, the most frequently occurring mental disorder in the final weeks of life, is characterized by impairments in attention, concentration, and cognition associated with behavioral and emotional disturbances [15]. Delirium most often results from medications and worsening illness and is associated with declining function, caregiver burden, and mortality [35]. Before the last decade, a variety of terms were used to refer to delirium, including acute confusional state, encephalopathy, organic brain syndrome, and intensive care unit psychosis [36]. Delirium now is defined in the International Classification of Disease –9 (ICD-9) and the DSM-IV [15,37]. In some palliative care literature, agitated delirium still is referred to as terminal restlessness or terminal agitation [38]. Studies of the epidemiology of delirium in elderly persons at the end of life are few, characterized by small numbers of patients and usually conducted in inpatient settings. Delirium occurs as a manifestation of the dying process, but also in persons with transient physical insults who will recover without permanent

846

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

effects—the clinical manifestations are similar in each context. Delirium develops over hours to days, and symptoms characteristically fluctuate throughout the course of the day. Early in an episode caregivers may observe restlessness, difficulty tracking conversation, and sleep dysregulation. Emotional symptoms include irritability and tearfulness; mild delirium often manifests as anxiety or dysphoria, which can lead to misguided pharmacologic or psychotherapeutic interventions. As delirium unfolds, patients seem distractible and sleepy, with disorganized thinking and incoherent speech. On mental status examination, patients manifest impairments in attention, concentration, memory (especially short-term memory), disorientation, language, abstraction, judgment, and visuoperceptual abilities. The sleep – wake cycle is disturbed with nighttime agitation and impaired sleep continuity [36,39]. The most common subtyping of delirium is based on the patient’s psychomotor state. Approximately one quarter of patients are primarily hypomotoric, experiencing lethargy, listlessness, apathy, and decreased motor activity. These patients often are diagnosed mistakenly with depression [40]. Another quarter is predominately hypermotoric, experiencing agitation, hypervigilance, restlessness, irritability, delusions, and hallucinations. The remaining half of patients has a mixed presentation. Although hypomotoric delirium is associated with higher rates of mortality, hyperactive patients have more risk for self harm, cause great distress to families, and increase caregiving burden [35,41 – 43]. The diagnosis of delirium is established by clinical interview and review of the course of illness with caregivers. Attention and concentration can be tested formally by asking the patient to recite a list of five random numbers, say the days of the week backward, or perform serial subtractions, such as Serial 3s [44]. Unimpaired elderly patients should make no errors on these tests. Most instruments used to screen for cognitive impairment, such as the Folstein Mini-Mental State Examination (MMSE), do not distinguish reliably between delirium and dementia; however, sudden declines in MMSE score may indicate new delirium [45]. Several new instruments have been developed for the diagnosis of delirium and the measurement of its severity, including the Confusion Assessment Method (CAM), Memorial Delirium Assessment Scale, and the Delirium Rating Scale [46 –49]. The prevalence and incidence of delirium increases with the burden of medical illness, medications, and functional disability in a population. Delirium occurs in 10% – 40% of elderly medical inpatients, 25% – 40% of hospitalized cancer patients, and 9% –44% of elderly surgical inpatients [50]. In studies of terminally ill patients admitted to inpatient settings, the point prevalence of delirium is 20% –61% and the incidence is 33% – 85%, with 80% – 90% of patients developing delirium in the final days of life [51 –56]. Factors that predispose to delirium include dementia, cognitive impairment, visual impairments, and increasing age. Other factors that predispose to delirium and also are precipitants include drugs, infections, metabolic disorders, and organ dysfunction [35,50,57]. As the number of precipitants and predisposing factors increase, the risk for developing delirium increases in a multiplicative manner

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

847

[35]. Lawlor et al [53], in a study of advanced cancer patients, reported a median of three precipitating factors per episode of delirium. Medications with anticholinergic actions, of which there are more than 600 marketed compounds, commonly are implicated [58]. A variety of medications used in terminal care have anticholinergic properties, including tricyclic antidepressants used to treat pain, scopolamine used to dry secretions, and antinausea drugs. Benzodiazepines have been associated with development of delirium in many studies [59,60]. Although recommended as a treatment for delirium by some experts, in a blinded study comparing lorazepam to antipsychotics, the lorazepam arm was discontinued early because of worsening cognition and adverse effects. Opioids, especially meperidine and morphine, also are implicated frequently, especially for patients who are receiving repeated doses, who are older, or who have kidney dysfunction [44]. Despite the risks from opioids, undertreatment of pain has been associated with delirium, and pain seems to make delirium more difficult to manage [51,61 – 63]. Other common causes of delirium at the end of life include dehydration, hypo- and hypernatremia, lung, kidney, liver, or cardiac failure, any systemic infection, or direct neurologic injury [39]. The financial and emotional costs of delirium are substantial, including functional decline, risk for nursing home placement, and iatrogenesis from inappropriate pharmacologic interventions [44]. Delirium results in lost opportunities to communicate and have meaningful relationships with others in the last weeks of life. In agitated delirium, there is a risk for harm to self and others and a substantial caregiving burden. At times, restraints are applied, worsening agitation and increasing risk for harm [39]. Among medical inpatients and advanced cancer patients, delirium is a harbinger of death, even when other predictors of mortality, such as age, illness severity, functional status, and clinical prediction of survival are taken into account [52,53,64 – 66]. Despite its importance in marking poor prognosis, most patients with advanced cancer who develop delirium improve before death, at times without intervention [52,53]. Lawlor [53], in a study of advanced cancer patients, found that delirium was more likely to be reversed if associated with dehydration and psychoactive medications, but less likely to be reversed if secondary to hypoxia and metabolic abnormalities. The most important component of care of the delirious patient is to find and treat the underlying causes of the delirium [39]. For elderly patients in the final weeks of life, this approach is balanced against the importance of avoiding burdensome interventions, especially those that might require hospitalization and that may, in and of themselves, worsen quality of life [44]. Diagnostic interventions may be especially limited in home hospice where extensive assessments may not offer a realistic hope of improvement. Because the likelihood of delirium in terminal care is so high, prospectively educating patients and family regarding this syndrome and understanding the patients’ and families’ goals of care can help guide treatment decisions. Although agitated delirium is treated aggressively in most settings, a more permissive attitude toward hypoactive delirium often is found in hospice settings, especially if the patient seems comfortable and peaceful.

848

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

Minimally burdensome interventions recommended by many experts include gentle hydration, with consideration of hypodermoclysis, and switching to another opioid preparation if pain medications are implicated as a cause of delirium [44]. Psychotropic medications are indicated for patients who are agitated, fearful, combative, delusional, or hallucinating. Haloperidol is the most often recommended psychotropic, as it is less likely to worsen delirium with its minimal anticholinergic effects, has a wide therapeutic window, and can be delivered by a variety of routes in home care [38]. Newer atypical antipsychotics do not seem to have advantages over haloperidol in the setting of terminal illness; they have more potentially problematic side effects and are comparatively much more expensive. Adverse effects of antipsychotics are mostly extrapyramidal, including drug-induced Parkinsonism that contributes to the risk for functional decline and falls, and akathisia that mimics worsening agitation and restlessness. Sedation, most often with benzodiazepines, is used in 4% – 36% of patients in the final days of life, most often for agitated delirium not responsive to other interventions [51,67]. These interventions are done to increase patient comfort and diminish distress, but may at times shorten life, especially as ability to take in food and hydration is curtailed [68]. This approach is considered ethically acceptable under the doctrine of ‘‘double effect,’’ if the goals of care are to diminish suffering, and hastened death, although anticipated, is not intended [69].

Dementia There are an estimated 1.8 million elderly individuals in the United States who have advanced dementia requiring extensive care from others [70]. Care in the final stage of dementia focuses on finding meaningful activities, treating behavioral disturbances, and balancing the benefits and burden of life-sustaining treatments [71]. Volicer and Hurley [72] classify the progression of dementia into four stages, with entry into Stage 4 marked by loss of independence in ambulation and ability to eat. This stage may last several years, culminating in complete loss of ambulation and speech, dysphagia, and intercurrent infections. Death by pneumonia is the most common terminal event. Approximately half of severely demented patients die within 6 months of an episode of pneumonia or after a hip fracture [70]. Luchins et al [73], using the Functional Assessment Staging Scale (FAST), reported that if patients lost function in an ordinal progression, the median life expectancy was 3 months at the point that patients were Stage 7C, defined as requiring assistance in ambulation, grooming, and dressing, inability to speak or communicate, and incontinence of bowel and bladder. In focusing on dementia at the end of life, the authors focus on patients who are at FAST Stage 7 [74], with the caveat that most studies of interventions for ‘‘severe’’ dementia include patients with a substantially higher level of function. Because of their limited life expectancy, patients at this point could be considered for hospice care, and the National Hospice and Palliative Care Organization has published guide-

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

849

lines on criteria for enrollment of these patients [75]. Often because of their extensive care needs, patients with Alzheimer disease at this stage require skilled care in a nursing facility. Because patients at the terminal stage of the illness lack capacity for decisionmaking regarding medical care, families must struggle with difficult choices about life-sustaining healthcare, such as cardiopulmonary resuscitation, tube feedings, and antibiotic treatment. There is conflicting information regarding the benefits and burdens of these treatments for extending life and improving its quality, and often no knowledge about what the patient would have wanted if capable of making an informed decision. There may be strong cultural and individual differences in how families approach these issues. For example, in a survey of caregivers of severely impaired patients with Alzheimer disease in Taiwan, 61% preferred highly aggressive care, whereas only 3% preferred solely palliative care [76]. Caregivers of demented patients in Britain were divided on aggressive treatment, with 40% wanting cardiopulmonary resuscitation [77]. In contrast, 90% of family members of demented patients in the United States approved of hospice [78]. As dementia progresses, food refusal, dysphagia, and choking result in progressive weight loss and episodes of aspiration pneumonia [71]. Quality care requires extensive family and aide time for careful hand-feeding [79]. Tube feeding often is initiated during an episode of illness. Among severely cognitively impaired patients, it is uncertain if artificial nutrition prolongs survival, improves comfort, prevents complications such as decubitus ulcers, or improves muscle tone [80 –83]. Aspiration pneumonia remains common with all types of mechanical feedings, including gastrostomy and jejunostomy tubes. Attempts to prevent patients from pulling out tubes may lead to mechanical and pharmacologic restraints [83]. Because the medical benefits of artificial feeding are uncertain and quality of life may worsen, many experts approve of forgoing artificial nutrition. Comfort feeding can continue in some patients with aspiration, following evaluation of feeding difficulties [84]. In the final stages of dementia, patients do not seem to suffer when food and fluid intake stops as long as patients are offered water and ice chips [78]. The medical benefit of antibiotic treatment also has been challenged. Some studies have demonstrated that antibiotic use is not associated with improved survival in end stage dementia, and treatment is associated with burdensome interventions such as hospital transfer and mechanical restraints [85,86]. More recently however, Van der Steen et al [87] reported that among demented patients who died of pneumonia, discomfort was higher among those in whom antibiotics were withheld. In contrast to William Osler’s belief that pneumonia was a ‘‘friend of the aged,’’ discomfort was higher in patients dying of pneumonia compared with other causes. Further study is needed regarding the optimal palliation of these patients. The most problematic behavioral symptoms among severely demented patients include resistance to care, restlessness, repetitive behaviors, social disengagement, disruptive calling out, and aggression [72,88,89]. In the only population-based study of dementia patients in the United States the most

850

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

common neuropsychiatric symptoms in ‘‘severe dementia’’ (Clinical Dementia Rating Scale Stage 3– 5) were apathy (32%), agitation/aggression (29%), and irritability (23%). Aggression/agitation, aberrant motor behavior, and hallucinations are more common among patients with severe dementia than at earlier stages of the illness [90]. As language and ambulation become more impaired, psychosis and wandering behaviors, prominent in the mid course of the illness, may be less problematic [89,91]. As at all stages of the illness, the most important interventions for new behavior problems are to examine for new medical illness, medication effects, pain, and environmental changes [92 – 94]. Analysis of the timing of the behaviors may lead to strategies for intervention. Caregivers who observe situations that trigger behavioral problems can develop solutions creatively. For example, a patient who becomes combative and resistive to care during bathing may benefit from a modified procedure that allows the patient to remain in bed covered with warm towels while being cleansed [95]. General approaches that are recommended at this stage of the illness include use of calm and soothing tone, ensuring adequate lighting, minimization of noise in the environment, simple directions, and use of distraction and redirection as opposed to arguing or scolding [96]. When behavioral problems are severe, pharmacologic interventions are considered. Most studies of interventions for behavioral problems in Alzheimer disease include patients who have mild to moderate severity of disease and who are without significant medical and behavioral comorbidities. Even among those studies focused on severely demented patients in nursing homes, patients have measurable scores on the MMSE, whereas those in the terminal stage generally have little speech and are not testable on the MMSE. Cholinesterase inhibitors have no known beneficial effect at this stage of the illness. Antipsychotic medications have modest efficacy for agitation and psychotic symptoms, with average effect sizes (the differences between drug and placebo) of 26%. The high rates of placebo responses in clinical trials (19% – 50%) suggest that in individual cases it can be difficult to determine if improvement in behavior is because of medication or regression to the mean [97]. Even low dosages of haloperidol such as 2 – 3 mg/day result in disabling drug-induced Parkinsonism [98]. The advantages of newer atypical antipsychotics are similar efficacy with less drug-induced Parkinsonism and less liability for tardive dyskinesia. For example, among demented nursing home residents with an average MMSE score of 7 and psychotic and behavioral symptoms, olanzapine at 5- or 10-mg doses was significantly more effective than placebo. The adverse effects included somnolence and gait disturbance, but cognitive impairment did not worsen and extrapyramidal symptoms did not develop. Risperidone also has shown efficacy for psychosis and aggression in inpatients with severe dementia, though adverse effects were noted in dosages of 2 mg/day or greater [99,100]. Although provisional criteria for depression of Alzheimer disease have been proposed [101] and the correlates of depressive signs/symptoms in dementia have been examined, [102], they remain difficult to apply to patients who have limited

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

851

language abilities. In placebo-controlled studies of efficacy of antidepressants, including selective serotonin reuptake inhibitors, the results are mixed and placebo responses are substantial [103,104]. As with other behavioral problems, nonpharmacologic interventions for depression should be attempted before medications. Teri et al [105] demonstrated positive effects of provision of pleasant activities and caregiver problem-solving for depressive symptoms in dementia patients.

Caregiver issues at the end of life Internationally, most support for ill older adults is provided by family members, often older spouses. Caregiving at the end of life is uniquely stressful, as caregivers who seek to provide a good death for their loved ones take on responsibility for ensuring that patient wishes are met [106]. Strain results from discomfort as the decision-maker, particularly when patient wishes and technology clash, when negotiating the uncertainty inherent to life’s end, when feeling protective of the patient, when experiencing fatigue and debilitation from home caregiving [107], and when caring for a depressed loved one [108]. Support for caregivers takes many forms and buffers stress. Hospitals and hospice agencies provide institutional support beyond the primary care provider through contact with nurses, social workers, pastoral care, and psychologists. Community resources include group and individual therapy, support groups specific to organizations such as the Alzheimer’s Association, and church congregations. The positive support of family and friends, both instrumental and emotional, is a strong predictor of mental health and general health for the caregiver [106,109]. Another important mode of intervention for caregiver stress is the provision of adequate information. Together with the patient, caregivers are grappling with uncertainty and unpredictability during the dying trajectory. Education about the predictable aspects of the patient’s course, including the final hours of life, lessens the strain of uncertainty and improves communication with the primary care provider [107]. In dementia care, caregiver training about dementia can lighten depression and the sense of burden of the caregiver and can improve the caregiver’s morale and willingness to help [110,111]. Caregivers and patients may experience anticipatory grief as they contemplate separation, and the opportunity for goodbyes becomes meaningful in this context. Bereavement in the wake of the loved one’s death is distinguishable from depression by diagnostic criteria, the extent to which it interferes with coping and daily functioning, and by retention of the capacity for pleasure. Caregivers who meet diagnostic criteria for depression may be helped by antidepressant medication, however, and may be more likely to remain in treatment if medication is combined with supportive psychotherapy [112]. Complicated grief [113] is more likely to develop if the caregiver is unprepared for death. Complicated grief is characterized by unrelenting yearning for the deceased

852

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

and traumatic stress symptoms including numbness, disbelief, and bitterness lasting at least 6 months. Traditional psychotherapy and tricyclic antidepressants do not seem to be as effective with this syndrome; combined traumatic grief therapy and selective serotonergic reuptake inhibitors are recommended as optimal treatment [113].

References [1] World Health Organization. Cancer pain relief and palliative care. Technical Report Series 804. Geneva; 1990. [2] Medicare Rights Center. A technical guide to the Medicare home health benefits: care for people with advanced illnesses. New York, NY: Medicare Rights Center; 1998. [3] National Hospice and Palliative Care Organization. Facts and figures on hospice care in America. Alexandria, VA: National Hospice and Palliative Care Organization; 2003. [4] Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA. Physicians’ experiences with the Oregon Death with Dignity Act. N Engl J Med 2000;342:557 – 63. [5] Ganzini L, Harvath TA, Jackson A, Goy ER, Miller LL, Delorit MA. Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med 2002;347:582 – 8. [6] Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity in the terminally ill: a cross-sectional, cohort study. Lancet 2002;360:2026 – 30. [7] Chochinov HM. Psychiatry and terminal illness. Can J Psychiatry 2000;45:143 – 50. [8] Werth JL, Gordon JR, Johnson Jr RR. Psychosocial issues near the end of life. Aging Ment Health 2002;6:402 – 12. [9] Clarke DM, Mackinnon AJ, Smith GC, McKenzie DP, Herrman HE. Dimensions of psychopathology in the medically ill. Psychosomatics 2000;41:418 – 25. [10] Betts Adams K. Depressive symptoms, depletion, or developmental change? Withdrawal, apathy, and lack of vigor in the Geriatric Depression Scale. Gerontologist 2001;41:768 – 77. [11] Lander M, Wilson K, Chochinov HM. Death and dying. Depression and the dying older patient. Clin Geriatr Med 2000;16:335 – 56. [12] Chochinov HM, Wilson KG, Enns M, Lander S. Prevalence of depression in the terminally ill: effects of diagnostic criteria and symptom threshold judgments. Am J Psychiatry 1994;151: 537 – 40. [13] Lloyd-Williams M. Difficulties in diagnosing and treating depression in the terminally ill cancer patient. Postgrad Med J 2000;76:555 – 8. [14] NIH Consensus Development Panel on Depression in Late Life. Diagnosis and treatment of depression in late life. JAMA 1992;268:1018 – 24. [15] American Psychiatric Association. Diagnostic and statistical manual of mental disorders, IV. Washington, DC: American Psychiatric Press; 1994. [16] Block SD. Assessing and managing depression in the terminally ill patient. Ann Intern Med 2000; 132:209 – 18. [17] Lees N, Lloyd-Williams M. Assessing depression in palliative care patients using the visual analog scale: a pilot study. Eur J Cancer Care 1999;8:220 – 3. [18] Chochinov HM, Wilson KG, Enns M, Lander S. ‘‘Are you depressed?’’ Screening for depression in the terminally ill. Am J Psychiatry 1997;154:674 – 6. [19] Lloyd-Williams M. Screening for depression in palliative care patients: a review. Eur J Cancer Care 2001;10:31 – 5. [20] Kroenke K, Spitzer RL, Williams JBW. The PHQ-9. Validity of a brief depression severity measure. J Gen Intern Med 2001;16:606 – 13. [21] Zigmund AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983; 67:361 – 70.

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

853

[22] Urch C, Chamberlain J, Field G. The drawback of the Hospital Anxiety and Depression Scale in the assessment of depression in hospice inpatients. Palliat Med 1998;12:395 – 6. [23] Beck AT. Beck depression inventory. San Antonio, TX: The Psychological Corporation; 1987. [24] Yesavage JA, Brink TL, Rose TL, Lum O, Huang V, Adey M, et al. Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res 1982;17: 37 – 49. [25] Goodwin PJ, Leszcz M, Ennis M, Koopmans J, Vincent L, Guther H, et al. The effect of group psychosocial support on survival in metastatic breast cancer. N Engl J Med 2001;345:1719 – 26. [26] Turk DC, Feldman CS. A cognitive-behavioral approach to symptom management in palliative care. In: Chochinov HM, Breitbart W, editors. Handbook of psychiatry in palliative medicine. New York: Oxford University Press; 2000. p. 223 – 39. [27] Rodin G, Gillies LA. Individual psychotherapy for the patient with advanced disease. In: Chochinov HM, Breitbart W, editors. Handbook of psychiatry in palliative medicine. New York: Oxford University Press; 2000. p. 189 – 96. [28] Olin J, Masand P. Psychostimulants for depression in hospitalized cancer patients. Psychosomatics 1996;37:57 – 62. [29] Breitbart W, Strout D. Delirium in the terminally ill. Clin Geriatr Med 2000;16:357 – 72. [30] Payne DK, Massie MJ. Anxiety in palliative care. In: Chochinov HM, Breitbart W, editors. Handbook of psychiatry in palliative medicine. New York: Oxford University Press; 2000. p. 63 – 74. [31] Barraclough J. ABC of palliative care: depression, anxiety, and confusion. BMJ 1997;315: 1365 – 8. [32] Mosenthal AC, Lee KF. Management of dyspnea at the end of life: relief for patients and surgeons. J Am Coll Surg 2002;194:377 – 86. [33] Jacobsen P, Bovberg D, Redd W. Anticipatory anxiety in women receiving chemotherapy for breast cancer. Health Psychol 1993;12:469 – 75. [34] Derogatis LR, Melisaratos N. The brief symptom inventory: an introductory report. Psychol Med 1983;13:595 – 605. [35] Inouye SK, Bogardus Jr ST, Charpentier PA, Leo-Summers L, Acapora D, Holford TR, et al. A multicomponent intervention to prevent delirium in hospitalized older patients. N Engl J Med 1999;340:669 – 76. [36] Lipowski ZJ. Delirium: acute confusional states. New York: Oxford University Press; 1990. [37] Practice Management Information Corporation. International classification of diseases, 9th revision, clinical modification. 5th edition. Los Angeles, CA; 1997. [38] Breitbart W, Chochinov HM, Passik S. Psychiatric aspects of palliative care. In: Doyle D, Hanks GWC, MacDonald N, editors. Oxford textbook of palliative medicine. 2nd edition. New York: Oxford University Press; 1998. p. 933 – 54. [39] American Psychiatric Association. Practice guideline for the treatment of patients with delirium. Am J Psychiatry Suppl 1999;156:1 – 20. [40] Farrell K, Ganzini L. Misdiagnosing delirium as depression in medically-ill elderly patients. Arch Intern Med 1995;155:2459 – 64. [41] Liptzin B, Levkoff SE. An empirical study of delirium subtypes. Br J Psychiatry 1992;161: 843 – 5. [42] O’Keeffe ST, Lavan JN. Clinical significance of delirium subtypes in older people. Age Ageing 1999;28:115 – 9. [43] Meagher DJ, O’Hanlon D, O’Mahony E, Casey PR, Trzepacz PT. Relationship between symptoms and motoric subtype of delirium. J Neuropsychiatry Clin Neurosci 2000;12:51 – 6. [44] Casarett DJ, Inouye SK. Diagnosis and management of delirium near the end of life. Ann Intern Med 2001;135:32 – 40. [45] Folstein MF, Folstein SE, McHugh PR. Mini-mental state: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189 – 98. [46] Trzepacz PT, Baker RW, Greenhouse J. A symptom rating scale for delirium. Psychiatry Res 1988;23:89 – 97.

854

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

[47] Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S. The Memorial Delirium Assessment Scale. J Pain Symptom Manage 1997;13:128 – 37. [48] Inouye SK, van Dyck CH, Alessi CA, Balkin S, Siegal AP, Horwitz RI. Clarifying confusion: the confusion assessment method. A new method for detection of delirium. Ann Intern Med 1990; 113:941 – 8. [49] Smith MJ, Breitbart WS, Platt MM. A critique of instruments and methods to detect, diagnose, and rate delirium. J Pain Symptom Manage 1995;10:35 – 77. [50] Fann JR. The epidemiology of delirium: a review of studies and methodological issues. Semin Clin Neuropsychiatry 2000;5:64 – 74. [51] Gagnon P, Allard P, Masse B, DeSerres M. Delirium in terminal cancer: a prospective study using daily screening, early diagnosis and continuous monitoring. J Pain Symptom Manage 2000;19: 412 – 26. [52] Bruera E, Miller L, McCallion J, Macmillan K, Krefting L, Hanson J. Cognitive failure in patients with terminal cancer: a prospective study. J Pain Symptom Manage 1992;7:192 – 5. [53] Lawlor PG, Gagnon B, Mancini IL, Pereira JL, Hanson J, Suarez-Almazor ME, et al. Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med 2000;160:786 – 94. [54] Massie MJ, Holland J, Glass E. Delirium in terminally ill cancer patients. Am J Psychiatry 1983; 140:1048 – 50. [55] Pereira J, Hanson J, Bruera E. The frequency and clinical course of cognitive impairment in patients with terminal cancer. Cancer 1997;79:835 – 42. [56] Minagawa H, Uchitomi Y, Yamawaki S, Ishitani K. Psychiatric morbidity in terminally ill cancer patients. A prospective study. Cancer 1996;78:1131 – 7. [57] Trzepacz PT. Delirium: advances in diagnosis, pathophysiology, and treatment. Psychiatr Clin N Am 1996;19:429 – 48. [58] Tune LE. Serum anticholinergic activity levels and delirium in the elderly. Semin Clin Neuropsychiatry 2000;5:149 – 53. [59] Francis J, Martin D, Kapoor WN. A prospective study of delirium in hospitalized elderly. JAMA 1990;263:1097 – 101. [60] Marcantonio ER, Juarez G, Goldman L, Mangione CM, Ludwig LE, Lind L, et al. The relationship of postoperative delirium with psychoactive medications. JAMA 1994;272:1518 – 22. [61] Fainsinger RL, Tapper M, Bruera E. A perspective on the management of delirium in terminally ill patients on a palliative care unit. J Palliat Care 1993;9:4 – 8. [62] Lynch EP, Lazor MA, Gellis JE, Orav J, Goldman L, Marcantonio ER. The impact of postoperative pain on the development of postoperative delirium. Anesth Analg 1998;86: 781 – 5. [63] Bruera E, Fainsinger RL, Miller MJ, Kuehn N. The assessment of pain intensity in patients with cognitive failure: a preliminary report. J Pain Symptom Manage 1992;7:267 – 70. [64] Caraceni A, Nanni O, Maltoni M, Piva L, Indelli M, Arnoldi E, et al. Impact of delirium on the short term prognosis of advanced cancer patients. Cancer 2000;89:1145 – 9. [65] Morita T, Tsunoda J, Inoue S, Chihara S. The Palliative Prognostic Index: a scoring system for survival prediction of terminally ill cancer patients. Support Care Cancer 1999;7:128 – 33. [66] Metitieri T, Bianchetti A, Trabucchi M. Delirium as a predictor of survival in older patients with advanced cancer. Arch Intern Med 2000;160:2866 – 8. [67] Fainsinger RL, De Moissac D, Mancini I, Oneschuk D. Sedation for delirium and other symptoms in terminally ill patients in Edmonton. J Palliat Care 2000;16:5 – 10. [68] Fainsinger RL, Waller A, Bercovici M, Bengtson K, Landman W, Hosking M, et al. A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med 2000;14:257 – 65. [69] Beauchamp TL, Childress JF. Principles of biomedical ethics. 4th edition. New York: Oxford University Press, Inc.; 1994. [70] Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA 2000;284: 47 – 52.

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

855

[71] Volicer L. Alzheimer’s disease and dementia: management of severe Alzheimer’s disease and end-of-life issues. Clin Geriatr Med 2001;17:377 – 91. [72] Volicer L, Hurley A. Hospice care for patients with advanced progressive dementia. New York, NY: Springer Publishing Company, Inc.; 1998. [73] Luchins DJ, Hanrahan P, Murphy K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc 1997;45:1054 – 9. [74] Reisberg B. Functional Assessment Staging (FAST). Psychopharmacol Bull 1988;24:653 – 9. [75] Stuart B, Herbst L, Kinbrunner B, et al. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases. Arlington, VA: National Hospice Organization; 1995. [76] Chen WT, Wang SJ, Lu SR, Fuh JL. Which level of care is preferred for end-stage dementia? Survey of Taiwanese caregivers. J Geriatr Psychiatry Neurol 2002;15:16 – 9. [77] Potkins D, Bradley S, Shrimanker J, O’Brien J, Swann A, Ballard C. End of life treatment decisions in people with dementia: caregivers’ views and the factors which influence them. Int J Geriatr Psychiatry 2000;15:1005 – 8. [78] Luchins DJ, Hanrahan P. What is the appropriate level of health care for end-stage dementia patients? J Am Geriatr Soc 1993;41:25 – 30. [79] Hurley AC, Volicer L. Alzheimer disease: ‘‘It’s okay, Mama, if you want to go, it’s okay.’’ JAMA 2002;288:2324 – 31. [80] Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med 2001;161:594 – 9. [81] Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med 1997; 157:327 – 32. [82] Peck A, Cohen CE, Mulvilhill MN. Long-term enteral feeding of aged demented nursing home patients. J Am Geriatr Soc 1990;38:1195 – 8. [83] Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000;342:206 – 10. [84] Frissoni GB, Franzoni S, Bellelli G, Morris J, Warden V. Overcoming eating difficulties in the severely demented. In: Volicer L, Hurley A, editors. Hospice care for patients with advanced progressive dementia. New York, NY: Springer Publishing Company, Inc.; 1998. p. 48 – 67. [85] Fabiszewski KJ, Volicer B, Volicer L. Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients. JAMA 1990;263:3168 – 72. [86] Hanrahan P, Raymond M, McGowan E, Luchins DJ. Criteria for enrolling dementia patients in hospice: a replication. Am J Hosp Palliat Care 1999;16:395 – 400. [87] Van der Steen JT, Ooms ME, van der Wal G, Ribbe MW. Pneumonia: the demented patient’s best friend? Discomfort after starting or withholding antibiotic treatment. J Am Geriatr Soc 2002;50: 1681 – 8. [88] Shuster Jr JL. Palliative care for advanced dementia. Clin Geriatr Med 2000;16:373 – 86. [89] Jeste DV, Wragg RE, Salmon DP, Harris MJ, Thal LJ. Cognitive deficits of patients with Alzheimer’s disease with and without delusions. Am J Psychiatry 1992;149:184 – 9. [90] Lyketsos CG, Steinberg M, Tschanz JT, Norton MC, Steffens DC, Breitner JCS. Mental and behavioral disturbances in dementia: findings from the Cache County study on memory and aging. Am J Psychiatry 2000;157:708 – 14. [91] Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease, I: disorders of thought content. Br J Psychiatry 1990;157:72 – 6. [92] Ballard CG, O’Brien J, James I, Swann A. Identification and measurement of behavioural and psychological symptoms in dementia. In: Ballard CG, O’Brien J, James I, Swann A, editors. Dementia: management of behavioral and psychological symptoms. New York: Oxford University Press; 2001. p. 3 – 15. [93] Geda YE, Rummans TA. Pain: cause of agitation in elderly individuals with dementia. Am J Psychiatry 1999;156:1662 – 3.

856

E. Goy, L. Ganzini / Clin Geriatr Med 19 (2003) 841–856

[94] Alexopoulos GS, Silver JM, Kahn DA, Frances A, Carpenter D. Treatment of agitation in older persons with dementia. Postgraduate Medicine Special Report March 1998;286:1 – 80. [95] Sloane PD, Rader J, Barrick AL, et al. Bathing persons with dementia. Gerontologist 1995;35: 672 – 8. [96] Kahn D, Gwyther LP, Frances A. Agitation in older persons with dementia: a guide for families and caregivers. Postgraduate Medicine Special Report 1998;286:81 – 8. [97] Lancoˆt KL, Best TS, Mittmann N, Liu BA, Oh PI, Einarson TR, et al. Efficacy and safety of neuroleptics in behavioral disorders associated with dementia. J Clin Psychiatry 1998;59: 550 – 61. [98] Devanand DP, Marder K, Michaels KS, Sackeim HA, Bell K, Sullivan MA, et al. A randomized, placebo-controlled dose-comparison trial of haloperidol for psychosis and disruptive behaviors in Alzheimer’s disease. Am J Psychiatry 1998;115:1512 – 20. [99] Katz IR, Jeste DV, Mintzer JE, Clyde C, Napolitano J, Brecher M. Comparison of risperidone and placebo for psychosis and behavioral disturbances associated with dementia: a randomized, double-blind trial. J Clin Psychiatry 1999;60:107 – 15. [100] De Deyn PP, Rabheru K, Rasmussen A, Bocksberger JP, Dautzenberg PLJ, Eriksson S, et al. A randomized trial of risperidone, placebo, and haloperidol for behavioral symptoms of dementia. Neurology 1999;53:946 – 55. [101] Olin JT, Schneider LS, Katz IR, Meyers BS, Alexopoulos GS, Breitner JC, et al. Provisional diagnostic criteria for depression of Alzheimer disease. Am J Geriatr Psychiatry 2002;10: 125 – 8. [102] Lyketsos CG, Breitner JCS, Rabins PV. An evidence-based proposal for the classification of neuropsychiatric disturbance in Alzheimer’s disease. Int J Geriatr Psychiatry 2001;16:1037 – 42. [103] Lyketsos CG, Olin J. Depression in Alzheimer’s disease: overview and treatment. Biol Psychiatry 2002;52:243 – 52. [104] Lyketsos CG, Sheppard JE, Steele CD, Kopunek S, Steinberg M, Baker AS, et al. Randomized, placebo-controlled, double-blind clinical trial of sertraline in the treatment of depression complicating Alzheimer’s disease: initial results from the depression in Alzheimer’s disease study. Am J Psychiatry 2000;157:1686 – 9. [105] Teri L, Logsdon RG, Peskind E, Raskind M, Weiner MF, Tractenberg RE, et al. Treatment of agitation in AD: a randomized, placebo-controlled clinical trial. Neurology 2000;55:1271 – 8. [106] Zarit SH, Johansson L, Jarrott SE. Family caregiving: stresses, social programs, and clinical interventions. In: Nordhus IH, VandenBos GR, Bert S, Fromhold P, editors. Clinical geropsychology. Washington, DC: American Psychological Association; 1999. p. 345 – 60. [107] Kirchhoff KT, Walker L, Hutton A, Spuhler V, Cole BV, Clemmer T. The vortex: families’ experiences with death in the intensive care unit. Am J Crit Care 2002;11:200 – 9. [108] Desbiens NA, Mueller-Rizner N, Virnig B, Lynn J. Stress in caregivers of hospitalized oldestold patients. J Gerontol Med Sci 2001;56A:M231 – 5. [109] Seeman TE. Health promoting effects of friends and family on health outcomes in older adults. Am J Health Promot 2000;14:362 – 70. [110] Hepburn KW, Tornatore J, Center B, Ostwald SW. Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. J Am Geriatr Soc 2001;49:450 – 7. [111] Wadley V, Haley WE. Diagnostic attributions versus labeling: impact of Alzheimer’s disease and major depression diagnoses on emotions, beliefs, and helping intentions of family members. J Gerontol Psychol Sci Soc Sci 2001;56B:244 – 52. [112] Reynolds CF, Miller MD, Pasternak RE, Frank E, Perel JM, Cornes C, et al. Treatment of bereavement-related major depressive episodes in later life: a controlled study of acute and continuation treatment with nortriptyline and interpersonal psychotherapy. Am J Psychiatry 1999;156:202 – 8. [113] Prigerson HG, Jacobs SC. Caring for bereaved patients: ‘‘All the doctors just suddenly go.’’ JAMA 2001;286:1369 – 76.