Managing depression among people with HIV disease

Managing Depression Among People With HIV Disease Sharon M. Valente, PhD, RN, FAAN, and Judith M. Saunders, DNSc, RN, FAAN

Many people with HIV suffer from depression, which responds to antidepressants, counseling, education, and cognitive strategies. Untreated

Sharon M. Valente,PhD, RN, FAAN, is Assistant Professor,University of Southern California,Los Angeles, CA, and Consultant, Department of VeteranAffairs;Judith M. Saunders,DNSc, RN, FAAN, is Assistant Professor, University of Southern California,Los Angeles, CA.

depression hinders treatment compliance and increases risk of suicide. Management and complications of major depression are described. The evaluation of rational suicide is examined. Clinicians who treat this population need to respond therapeutically to patients with depression and suicidal ideas. K e y w o r d s : HIV disease, psychological states,

treatment of depression

JANAC %Iol.8, No. 1, January-Februar~1997

M a j o r depression is one of the most common and treatable psychiatric disorders among HIV-infected people in the United States (Markowitz, Rabkin, & Perr~ 1994). Stress, depressive side effects of medication, fatigue, neurological changes, and distressing symptoms from HIV disease can precipitate major dep~sion (Markowitz et al.; Perry, 1990). Among the general population, about 5% of people experience depression (Capaldini, 1994). The prevalence of depression among HW+ people ranges from 4 to 14 percent and rates increase with disease progression and HIV-associated organic disease (Capaldini; Kizer, Greens, Perkins, Doebbert, & Hughes, 1988; Williams, Rabkin, Remien, Corman & Ehrhardt, 1991). Several medications commonly used to treat HIV disease may cause depression including zidovudine (AZT), acyclovir, anticonvulsants, isoniazid (INH), opiates, corticosteroids, anabolic steroids, and quinolones, sulfonamides, and narcotics (Capaldini). Untreated depression hinders compliance with medical regimens and increases risk of suicide 0d.S. DHHS, 1993; Bongar, 1992; Perry, 1990; Perry & Fishman, 1993; Saunders & Valente, 1993). Yet, depression in people with HIV infection is often overlooked by clinicians. Alleviating major depression can improve quality of life and treatment compliance, and often reduces the risk of suicide. A number of researchers have described the frequency of depressive symptoms among diverse HIVinfected populations; details on the sampling, methods used in these studies, and study findings are given in Table 1. For example, Perry (1990) studied 244 male and 57 female volunteers from news and public service ads, medical clinics, and drug rehabilitation programs in New York City. The sample included 36 IDU, 75 heterosexuals, and 199 homosexuals. Of this group 49 were HIV+. Findings of the study revealed low-grade 51

Table 1. Selected Research Studies Author

Sample

Design

Alfonso et al., 1994

Psychiatric cases AIDS, and H I V + / -

Post hoc analysis; case studies

McKegnegy et al., 1993

Psychiatry consultations 1988-1990 [322 AIDS (209 males)]; [82 HIV+ (56 males)], [1,086 H1V negative or unknown (434 males)]. Sexual orientation not specified.

Prospective study, adults and elderly Ss. No non-psychiatric controls

Copeland, 1993

Findings

Notes

Case reports

Caregivers should recognize dementia & suicide risk.

Substance abuse increased risk of suicide.

Psychiatric consults using structured clinical interviews

322 Ss. with AIDS were less suicidal than 82 HIV+ Ss and comparable in suicidality to 1,086 HIVor HIV unknown Ss.

Organicity, denial, acceptance, and/or preoccupation with fatal illness may reduce suicidality in people with AIDS.

25 cases of suicide Retrospective review among PWAs or who thought they had AIDS (9 homosexual) 1985-1989 in Dade Co., FL. Sexual orientation of 16 Ss not noted.

Autopsy of all suicides and data from medical examiner, Dade Co., FL

A wide variety of High suicide rates suicide methods among PWAs. were used. Annual suicide rate of 166.7/ 100,000 is a 9-fold increase (vs.'18.6/ 100,000 for general population).

Rabkin et al., 1993

53 gay men with opporttmistic infections in past 3 years from Gay Men's Health Crisis, New York Cir. 124 HIV+ and 84 HW-.

Convenience sample in 1990. Comparative interview and clinical assessment.

High level of positive emotional health independent of H W - illness stage

Cote et al., 1992

165 male and female Retrospective study suicides among of mortality data PWAs in U.S. from 1987 - 1989 National Center for Health Statistics mortality data 1987-1989. Retrospective study of mortality data 1987-1989.

Comparison, cross sectional

Methods

Surveillance and Self- poisoning with Males and females death certificate data drugs was most studied. common method (35%). Rate of suicide 165/100,000 was 7.4 fold higher than general population (p<.05).

Valente, Saunders, & N = 223 (91% male; Uman, 1993 9% females at STD or AIDS prevention clinic) HIV+, H1Vand at risk.

A comparative, cor- Impact of events, relational study of a Beck Depression convenience sample Inventory, Beck Hopelessness scale, symptom survey, clinical record review

People with 2 or more HW syruptoms had higher risk of depression and more unhealthy negative behaviors.

Schneider et al., 1991 778 gay and bisexual HIV+ and HIV-men without AIDS in MACS cohort; 212 with suicide ideas in past 6 months

Longitudinal study, Questionnaire and convenience sample. examination Covariance models used to examine predictors of suicide intent.

Current stressors Depression preand past levels of dicted suicide. adaptive functioning (depression) were more powerful predictors of suicide intent among HIV+ than HIV- ideators.

Breitbart, 1990

Comparative; compared HIV positive patients with pain and controls.

20%-40% of patients Higher rate of suicihad current suicide dal ideas in HW+ ideas; HIV+ (26%), with pain. HIV+ with pain (40%)

HIV+ Ss with pain and controls in an ambulatory medical clinic

Current suicidal ideas (BDI item 9)

Beck (BDI) and interview identified people with risk of suicide.

Continued on next page

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Table 1. Continued Author

Sample

Design

Perry, 1990

244 asymptomatic men, 57 women from news & public service ads, medical clinics & drug rehab program in New York City: IDU = 36, hetero = 75, homosexual = 199, H1V+ = 49

Rabkin et al., 1990

Community sam5- year ongoing, lonples, volunteers: gitudinal study well- educated: 208 HIV- positive homosexuals, without AIDS; 53 gay men with AIDS+ opporttmistic infections in last 3 yrs. Gay Men's Health Crisis, New York.

Comparative; nonrandom sample; randomly assigned to counseling

Methods

Findings

Notes

Case reports, inter- Correlated suicidal views about depres- ideas with depression, BDI scores sion. HIV+ reported suicide ideas @2 months; HIV- had decreased suicide ideas

Despite discrimination & vulnerability, they kept a sense of faith

Source: A review of the literature and authors *Adapted from Valente & Saunders in van Gorp and Buckingham (in press) depressive symptoms across all study groups (HIV posi -t tive, at risk, and seronegative individuals); depressive disorders occurred most often a m o n g those with past depressions, limited social support, and personality disorders. Perry r e c o m m e n d e d comprehensive evaluation and treatment for people with depression, particularly w h e n s y m p t o m s were accompanied by suicidal ideas. Marzuk and.associates (1988, 1991), in providing one of the first epidemiological examinations of depression and suicide a m o n g p e o p l e with AIDS, report that 50% of people with AIDS who committed suicide had been significantly depressed. Additionally, 40% of these individuals had seen a psychiatrist within four days before their suicide. This high rate of suicide a m o n g p e o p l e with AIDS had been p r e v i o u s d o c u m e n t e d b y Kizer et al. (1988), w h o e x a m i n e d California death certificates of JANAC Vol.8, No. 1, January-February,1997

m e n aged 2 0 - 3 9 with AIDS w h o had c o m m i t t e d suicide. He found that this g r o u p had a suicide rate that was 21 times higher than those without AIDS. Nurses can detect depressive side effects of medications, monitor risk factors, and intervene to reduce depression and p r e v e n t complications. Effective m a n a g e m e n t of depression rests on sound scientific knowledge. This article examines major depression in the context of HIV disease. Diagnosis, detection, incidence, and precipitants of depression are discussed. Pathophysiolog~ assessment, measurement, and management of depression are examined. Etiology and Pathophysiology of Depression The etiology of major depression is complex and multifactorial, particularly in the presence of HIV infection. 53

I Managing

Depression

Among

I II

People With HIV Disease

Although current knowledge suggests that HIV is not depressogenic, major depression may be secondary to central nervous system disorders, medication side effects, and nutritional deficiencies associated with HIV disease (Capaldini, 1994). Those with a personal or family history of depression, substance use, multiple losses, loss of social supports or confidants, and advanced HIV infection m a y be at higher risk for d e p r e s s i o n (Markowitz et al., 1994). Studies of "neurotransmitters have led to the theory that depression is biologically based and associated with alterations in serotonin metabolism (Slaby, 1995; Tucker, 1996). Norepinephrine, serotonin, and dopamine regulate mood, movement, and blood pressure. They stimulate and initiate postsynaptic impulse conduction. Nerve impulses prompt presynaptic neuron vesicles to secrete these chemicals, which travel across the neuronal synapse, connect to specific receptor sites, and continue impulse conduction. Norepinephrine, serotonin, and dopamine excite transmission while other chemicals (e.g., gamma aminobutyric acid system [GABA]) inhibit neurotransmission in the brain. This theory suggests that a certain level of amines a n d / o r receptor sensitivity to catecholamines regulates mood. A deficit in receptor sensitivity or a depletion in amine synthesis or storage leads to mood disorders (Tucker). Other studies suggest that the endocrine system or electrophysiology play a role in the etiology of depression (Tucker). From a psychological perspective, depression is also viewed as a complex phenomenon that emerges from major classes of life events such as severe disruption of interpersonal relationships including loss and separations, perfectionism, and from profound threats to selfesteem or self-worth (Blatt, 1995). Blatt suggests that selforiented and socially prescribed perfectionism and a sense of profound personal failure can make people feel vulnerable to further experiences of failure. The resulting feelings of helplessness, hopelessness, and utter despair can lead to clinical depression and suicide (Hewitt, Flett & Weber, 1992, 1994). Major depression is often linked with bereavement, substance abuse, and alcoholism. Alcoholism, however, 54

II

may be overlooked when symptoms such as alcoholinduced falls, insomnia, depression or loss of memory, libido, and c o g n i t i v e f u n c t i o n i n g are m i s t a k e n l y attributed to normal aging or HIV disease. HIV disease may also be a risk factor for major depression. In a sample of 223 adults who were p " n r n ~ y gay men attending a sexually transmitted disease (STD) or AIDS clinic, Valente, Saunders, and Uman (1993) found that rates of major depression correlated with number of HIV symptoms. This finding suggests that an increase in number of HIV symptoms may be a precipitating factor for depression. Potential risk factors for depression in HIV-positive individuals are listed in Table 2. The presence of any one or group of these risk factors should trigger an assessment for depression. Diagnosis of Depression The diagnosis of depression is made on a clinical basis with data from a neurobehavioral assessment, physical examination and history, risk factors and symptoms. According to the Diagnostic and Statistical Manual

Table 2. Risk Factors for Major Depression Among HIVInfected People Risk Factors History of (past or present) 9 Major psychiatric disorder (affectiveor organic mental disorder (Atkinson et al., 1988;Breitbart, 1993; Capaldini, 1994) 9 Chemical dependency (RundeUet al., 1986) 9 Physical abuse/self- injury 9 Poor control of pain/symptoms (Breitbart, 1993) 9 Advanced stages of HIV (Breitbart, 1993) 9 Medications with depressive side effects 9 Inadequate social support (Rundell et al., 1986) 9 Impaired body image 9 Changed work/family roles 9 Unresolved bereavement, guilt, hopelessness (Breitbart, 1993) 9 Perception of self as victim (Rundell et al., 1986) 9 Reliance on denial as central defense (Rundell et al., 1986) 9 Suicide history (Breitbart, 1993)

JANAC Vol.8, No. 1, January-February,1997

(DSMIV) (American Psychological Association, 1994), criteria for major depression include depressed mood, markedly diminished pleasure in almost all activities, significant weight loss, insomnia or hypersomnia, daily fatigue, feelings of worthlessness or excessive guilt, psychomotor retardation or agitation, thoughts of death and/or suicide, and diminished concentration. A person who has at least five of these symptoms (to include depressed mood or diminished pleasure at almost all activities) daffy for two weeks qualifies for a diagnosis of major depression. However, even among persons whose s y m p t o m s do not qualify for a diagnosis of major depression, their symptoms may represent other depressive disorders. Physical examination and laboratory data are used to help eliminate a possible organic etiology of symptoms associated with depression (Geringer, 1989). In the following excerpt from a case study (Saunders, 1997), a 50- year old office manager and actor with AIDS provides an example of how depression can affect a person's feelings and activities: When I take care of myself, I eat as well as possible, take my medicines, exercise, and avoid stress, and go out with friends and do things I enjoy. When I'm depressed, I'm bored silly and sleep a lot. When I first started taking AZT I went into a depression for a couple of months because all of a sudden it became real. I'd known before (diagnosis) that I was (HIV) positive, then m y T-Cells dropped and I started AZT. ! said, Why t h e . . . should I take that? Everybody I know who has taken that is dead. (When I'm depressed), I cancel everything--I don't go to m y support group and I cancel my therapy. I don't want to get deaned up. I don't want to go anyplace or do anything. I don't really w a n t to talk to a n y b o d y v e r y m u c h . Depression feels l i k e . . . I stare at the ceiling and I'm not motivated to do anything. I'm generally i n t e r e s t e d in a lot of things, but ( w h e n I'm depressed) I just don't feel like doing much of anything. (When I'm depressed) it adds to my lethargy. I watch a lot of television in the evening and nap JANAC

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during the day. When I was even more depressed, I literally spent a lot of time just lying on the bed staring at the ceiling. I knew I could get up, take a walk and feel better, but I didn't do it. My head reminds me I should get up, walk, and do all that sort of stuff, but I get isolated. I just don't care about being. Ifs an "I don't care syndrome' and I tell myself, I just don't have the energy to do what I need to be doing. Psychological symptoms typically provide the dearest indicators of major depression among medically ill people. Cavanaugh, Clark, and Gibbons (1983) compared medical and psychiatric populations and found that major depression in medically ill patients is most accurately indicated by cognitive and mood symptoms. These symptoms are demonstrated (as shown in the above case) by hopelessness, helplessness, guilt, low selfesteem, and anhedonia, and not by physical symptoms. Clinicians fail to diagnose major depression in people with HIV disease for several reasons. First, diagnosis is complicated because somatic symptoms such as fatigue, insomnia, and anorexia are also common symptoms of HIV disease, organic brain disease, and aging (vanGorp & Buckingham, in press). Second, dinicians and patients alike may discount and devalue emotional symptoms or attribute them to HIV disease. Therefore, clinicians unwittingly collude with patients in ignoring psychiatric symptoms. They doubt that symptoms that cannot be confirmed objectively are real. Third, patients m a y be embarrassed and reluctant to report emotional depressive symptoms but may report somatic symptoms. Clinicians may hesitate to confront the patient and explore personal or family problems. Few patients who develop psychological problems disdose them spontaneously to healthcare providers (Maguire, 1985). Nurses providing care for people with HIV disease should be particularly cognizant of the need to detect and report complaints or symptoms such as fatigue, insomnia, anorexia, or sadness, which may suggest a depressive disorder. Routine use of questionnaires or assessment scales can help clinicians screen patients for depression 55

Managing Depression Among People With HIV Disease

(Corcoran & Fischer, 1987). Clinicians need to select the questionnaire or scale most appropriate for their patient population. C o m m o n l y used scales include The Beck D e p r e s s i o n I n v e n t o r y (BDI) (Beck, 1979) a n d the H a m i l t o n Depression Scale (Hamilton, 1960). Use of these assessment scales is both quick a n d easy. The assessment can be completed by either the clinician or the patient. For example, patients m a y be asked to rate the f r e q u e n c y of such b e h a v i o r s as crying, fatigue, anorexia, and suicidal ideas. Details about c o m m o n l y used assessment scales and their target populations are outlined in Table 3.

Managing Depression Among People With HIV disease Antidepressant medications and psychopharmacology, counseling, education, assessment of suicide risk, and cognitive strategies are major components of the total management of major depression. The primary goal of p h a r m a c o l o g i c a l t h e r a p y is s y m p t o m r e d u c t i o n . Antidepressant agents are not merely a crutch to reduce symptoms but effectively treat the chemical imbalance that underlies major depression. The principal antidepressant drug classes are tricyclic antidepressants (TCA) and selected serotonin reuptake inhibitors (SSRI) (U.S.

Table 3. Screening Measurements for Depression Among Adults Instrument

Characteristics

Scoring

Population

9 Beck Depression Inventory (BDI)

Patients rate cognitive, afterfive, and somatic symptoms (e.g., insomnia, anorexia, fatigue, sadness, suicide) on a brief 21- item, self- report scale. Easily administered.

_<10= normal Cognifive/afect ive items best indicators of depression in medically ill (Cavanaugh et al., 1983). Items scored 0-3 points indicate frequency of behavior.

Medical patient in treatment

9 Hamilton Rating Scale (HRS)

Interviewer scores 25 items from psychic and somatic groups (e.g., sadness, guilt, suicide, anorexia). Somatic symptoms = 52% of total score.

Gives more credit to somatic symptoms than BDI and can give false positive and low specificity.Measures different aspects than BDI.

Medical in- patient

9 Hospital Anxiety and Depression (HADS) Scale

Easily administered selfreport questionnaire. Reported the best measure of stable patients free of physical disease and during treatment (Ibbotson, Maguire, Selby, Priestman, & Wallace, 1994)

Score ->8 warranted psychiattic evaluation. Score >-11 likely to have anxiety or depressive disorder by DSM IV criteria.

9 Center for Epidemiological Studies Depression Scale (CES-D) (Radloff, 1977)

A 20- question, self- report tool with high reliability and discriminant validity. It is unclear whether it measures depression or psychological distress. Some gender bias exists in items (Stammel et al., 1993).

Myers and Weissman (1980) suggest a cut- off of 16 or above for major dep~ssion. Scale yields a low false positive and a high false negative rate.

General population and community sample of people with cancer

From "Detection and Management of Major Depression, (in press), Cancer Nursing. Copyright 1996 by Lippincott-Raven Publishers. Used with permission.

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DHHS, 1993). Monoamine oxidase inhibitors (MAOIs) and psychostimulants are considered when other drugs fail. Electroconvulsive therapy is an effective treatment strategy for people with moderate or severe depression, particularly when pharmacology is not effective (Perry et al., 1994; Persad, 1990). Education, counseling, and psychotherapy can also help patients and their significant others to understand, prevent, and reduce depression. Combined pharmacotherapy, counseling, and education are recommended, particularly for HIV- infected people w i t h chronic a n d r e c u r r e n t d e p r e s s i v e d i s o r d e r s (Markowitz et al. 1994; Valente & Saunders, 1994). Psychopharmacology

Antidepressants effectively reduce symptoms of major depression. M a n y m e d i c a t i o n s - - i n c l u d i n g i m i p r a m i n e (Tofranil), a m i t r i p t y l i n e (Elavil) or desipramine (Norpramin), fluoxetine (Prozac), and stimulants (Fernandez & Levy, 1991)--have shown to be effective for HIV-positive patients (Fernandez & Levy, 1990, 1991; Manning, Markowitz, & Frances, 1992; Markowitz et al., 1994; Perry et al., 1994; Rabkin, Rabkin, Harrison, Wagner, 1994; Rabkin, Remien, Katloff, Williams, 1993). Antidepressants are generally well-tolerated with few adverse effects, and the recommended d o s a g e s do not increase i m m u n o s u p p r e s s i o n (Markowitz et al., 1994). Factors such as severity of depression, comorbid conditions, history of prior treatment response, and resources influence the choice of treatments. The antidepressant of choice for each patient should alleviate symptoms and have the lowest possible side-effect profile. Table 4 provides an overview of the side effect profile for commonly used antidepressant medications. However, it is important to note that wellcontrolled, double-blind studies evaluating antidepressants in people with I-IW are limited (Markowitz et al., 1994). Most medically ill people with H/V disease should be treated with antidepressants on a trial basis unless the patient actively uses recreational drugs or has a history of bipolar disorder (Capaldini, 1994). Initial episodes of JANAC

Vol. 8, No. 1, January-Februar~ 1997

acute depression respond well to treatment with antidepressants and psychotherapy (Breitbart, 1993; Markowitz et al., 1994; Perry, 1990). Tricyclic antidepressants (TCAs) are commonly used and are the most studied antidepressant medications for HIV-infected people (Markowitz et al., 1994). While the side effects of TCAs appear immediately, therapeutic effects do not occur for at least 2 - 3 weeks, so TCAs should be given an adequate trial before changing medications. Tricyclic antidepressants can lessen neuropathic pain and reduce insomnia. Common adverse effects include sedation, anticholinergic symptoms, orthostatic hypotension, and potential for overdose in suicide attempts because of the narrow therapeutic window and cardiotoxicity (Kapur, Mieczkowski, & Mann, 1992). Depressed HW-infected people respond well to tricydic antidepressants (Markowitz et al., 1994). Desipramine has the lowest sedative effects and nortriptyline has the lowest anticholinergic effects. Because TCAs can cause conduction defects, a baseline electrocardiogram (EKG) is useful in patients older than 45 or those with cardiac pathology. In people who are at high risk for postural hypotension and conduction disturbances, psychostimulants may offer a useful alternative pharmacological approach (Olin & Masand, 1996; Rabkin, 1993; White, Christensen, & Singer, 1992). The fears that anticholinergic side effects of TCAs might precipitate or exacerbate d e l i r i u m have not b e e n s u p p o r t e d in research (Markowitz et al., 1994). Newer antidepressants include selective serotonin reuptake inhibitors (SSRI) such as fluoxetine (Prozac), sertraline (Zoloft), and bupropion (Wellbutrin). Prozac is widely used for patients with HW disease (Shuster, Stern, & Greenberg, 1992). Most patients tolerate these medications well and report few side effects, although they can cause sexual dysfunction in 5%-10% of patients. Patients taking SSRIs also need to be educated to report sexual dysfunction side effects such as temporary or persistent decreased libido or arousal and impaired ejaculation. Initial side effects subside in a few weeks (e.g., hyperactivity, insomnia, nausea, headache) (Capaldini, 1994; Perry et al., 1994). These medications pose a lower suicide 57

M a n a g i n g D e p r e s s i o n A m o n g P e o p l e With H I V D i s e a s e

Table4. Side EffectProfilesof AntidepressantMedications Drug Antidepressant Medications (examples)

Side Effects Anti- cholinergic 1 (dry mouth)

CNS (drowsy/ agitation, insomnia)

Cardiac (Orthostatic hypotension/arrhythmia)

Other (GI effects2/ weight gain)

111-

0/2 0/1 0/2+

0 0 0

3+/0 2+/0 3+/0

4+ 1+ 3+ 3+

4-/0 1-/1+ 4-/0 3-/1+

4+/3+ 2+/2+ 2+/2+ 4+/3+

0/4+ 0/1+ 0/3+ 1+/3+

2+ 0-1+ 0-4+ 0-1+

2+/3+

0/1+

1+

0/1+

1+/0

2+

0/1+ 1/1+

0/2+ 1+/1+

1+ 1+

1 1

1+/2+ 1+/2+

2+/0 2+/0

1+/2+ 1+/2+

SSRIs Fluoxetine Sertraline Paroxetine Tricyclics3 Amitriptyline Desipramine Doxepin Imipramine

Heterocyclics Amoxapine Bupropion Maprotiline Trazodone MAOIs Nardil Parnate

Legend: Potential for side effects is rated on a 0-4 scale. 0 = none; 1 = rare; 2 = low; 3 = moderate; 4 = high potential 1 Dry mouth, blurred vision, urinary hesitancy, constipation 2 GI symptoms (e.g., nausea, vomiting, diarrhea) 3 If the patient is likely to plan suicide with an overdose, clinicians are advised to dispense limited amounts of MAOIs or tricyclics and monitor patient dosely before ordering refills. When patients have a high risk of suicide, SSRIs are often preferred because an overdose is not lethal. Note: Selection of a specific medication depends on various factors (e.g., short- and long-term side effects, potential interactions with other medications and disorders, prior response to antidepressants). From "Detection and Management of Major Depression, (in press), Cancer Nursing. Copyright 1996 by Lippincott-Raven Publishers. Used with permission. risk than TCAs (Capaldini; Kapur et al., 1992). Effexor has side effects shnilar to SSRIs and a low overdose potential. Regardless of the treatment chosen, therapists should set realistic goals that are appropriate to the stage of H1V illness progression (Markowitz et al., 1994). In a study by 58

Saunders (1997), a m a n with AIDS describes the impact of using antidepressants in the following way: The last big depression, I went on antidepressants. It was a big one (depression). I m e a n that was a JANAC VoL8, No. 1, January-February,1997

black hole in the pit. I couldn't see any light. I couldn't even see the walls of the tunnel. What the antidepressant does for me is assure me that there is a tunnel so I know I'm just in a phase or passage. If the light is a train, it is the train coming to help

low-up antidepressants are ordered to reduce ~ u r r e n c e of depression.

me.

Many psychosocial stressors such as the death of friends and loved ones and the stress of unpredictable life- threatening illness can be addressed in therapy. Brief focused therapies such as interpersonal therapy and cognitive behavioral therapy have been effective for HIVinfected p e o p l e (Kelly, M u r p h y , & Bahr, 1993). Therapeutic conversations, counseling, and education can help people reduce their depressive symptoms and cope with grief over death of significant others, relationship conflict, role transitions, adjustment to being HIV positive, and interpersonal deficits (Capaldini, 1994; Markowitz et al., 1994). Cognitive strategies for reducing major depression. Cognitive therapy, a directive, time-limited approach to helping change irrational thoughts (Beck, 1979), has been effective for people with I-UV disease (Kelly et al., 1993). Patients learn about the nature of depression and their negative thinking patterns. For instance, a person might wish to change their negative thoughts connected with feelings of inferiority and insecurity in social situations, low self- esteem, excessive guilt, or fear of failure. Cognitive therapists suggest that depression arises from a negative view of the world and from automatic and negative thinking patterns. For instance, one might expect to be perfect and loved at all times. Depression envelops the person in a triad of irrational beliefs that the future is bleak, the world is barren, and the self is worthless because, for example, one is not always perfect and loved (Beck, 1979; Burns, 1990; Wright, Thase, Beck, & Ludgate et al., 1993). Although one may have a life threatening illness, irrational fears about death, being unloved, or survivor guilt may cause unnecessary distress. Copeland (1993) and Frierson and Lippman (1988) report cases of suicide in which the fear of the diagnosis of AIDS led to the person committing suicide. An irrational fear can be so strong that it blocks discovery of the facts or alters the person's perspective. Irrational beliefs

Electroconvulsive Therapy (ECT) ECT is an effective treatment for depression, particularly when people do not respond well to psychopharmacology (Valente, 1991) or have severe unrelieved depression or high suicide risk (Perry et al., 1994; Persad, 1990). ECT has been used to effectively treat severe or refractory depression among people with HIV disease (Kessing, LaBianca, & Bolwig, 1994; Perry, 1994). However, the benefits of ECT need to be balanced with a patient's rights and the potential adverse cognitive effects of therapy. Additionally, patients need adequate information about side effects or embarrassing effects of ECT. Written information for patients and their family or significant others needs to be made available. Informed consents should be reexecuted between ECT treatments as the patient's c o m p r e h e n s i o n and concentration improve. Because depression may impair comprehension and memory, nurses should ensure that informed consent is obtained and the patient understands the risk of potential confusion and cognitive deficits from ECT. Medical and cardiovascular complications and memory loss have occurred among older adults and patients with existing cognitive and m e m o r y deficits (Valente). Side effects include headache, mild acute confusional state, and anterograde and retrograde amnesia. Post-ECT memory deficits should be tested by having the patient report important personal events that occurred a year ago, and not by testing digit span, which remains normal. To evaluate memory, clinicians need to collect baseline data and monitor patients' recall of their last major holiday or their last birthday. Patients who receive outpatient ECT require supervision when the confusion or memory loss may compromise their safety (Valente). After ECT, folJANAC Vol. 8, No. 1, January-February, 1997

Psychotherapeutic Treatments

59

Managing Depression Among People With HIV Disease

make it difficult for patients to seek help, to express fears, to enjoy relationships, and to escape emotional pain (Burns; Wright et al.). When depression is ignored, one potential consequence is that patients may view suicide as the only escape from emotional pain. The cognitive-behavioral model includes diverse cognitive and behavioral interventions that are particularly helpful for people living in the community or in institutions. Treatment focuses on here-and-now problems, i m p r o v e d problem solving, and rational thinking. Interventions include encouraging patients to notice when they view events negatively, to differentiate accurate from distorted perceptions, and to substitute accurate perceptions for overgeneralizations or catastrophic expectations (Burns, 1990). Nurses encourage patients to set realistic goals, identify their efforts toward success, and praise each step of a task. Assigned homework such as keeping a log of pleasurable events, skills mastered, or automatic thoughts reduces the depressed patient's tendency to forget or minimize success, satisfaction, or pleasure.

Cognitive appraisal, another therapeutic strategy, helps the patient identify typical irrational beliefs and automatic thought patterns such as overgeneralizing, personalizing, catastrophizing, and forming negative conclusions (Burns, 1990; Wright et al., 1993). After patients recognize these automatic thought patterns, they can identify alternate conclusions. Exploring how an event was misinterpreted and led to a negative generalization helps the patient recognize, examine, and change ingrained negative thinking habits. At least two alternative explanations for an event need to be considered. Patients also benefit from examining negative conclusions and h o w these influence their sadness or depressive symptoms. For example, Jenny had two children and her husband had just died when she learned from the Red Cross blood donor center she had AIDS. She was still grieving her husband's death from AIDS, but her main complaint was that depression made it difficult to go to work, care for the children, and manage daily activities. Her irrational beliefs included,

60

I have to be the perfect mother and daughter to my parents to be loved; and none of m y friends or family really care about me. I can't tell anyone about this disease; they wouldn't understand. I can't do anything right. (Valente and Saunders, 1993). When she reexamined her irrational ideas about needing to be perfect, she could see that her children and family loved her when she was not perfect, so fear of being imperfect waned. When she challenged her belief that "no one understands," she realized she had not told anyone of the diagnosis and so she joined a support group where people did understand about her disease. Graded tasks induded increasing her social support and asking family and friends for help. Graded task assignments such as making a list of three important tasks to do each day also helped her focus on the many tasks she was managing effectively. Although this expert focuses on cognitive strategies, the nurse continued to support Jenny's grieving, helped her to manage her health care and depression, and provided other referrals. Graded task assignments can be used to help people (Wright et al., 1993) prevent unrealistic expectations that lead to failure and a sense of worthlessness. Graded tasks effectively improve patients' low motivation for self-care, psychosocial activities, or following treatment regimens. These strategies also decrease withdrawal, increase activity, and improve treatment compliance of medically ill patients. The clinician and patient collaborate to identify a task such as personal hygiene or breathing exercises and break the task into small, concrete steps (Burns, 1990; Wright et al.). After clearly defining the problem and identifying possible solutions, they draw up a plan of several small, realistic steps that the patient can successfully complete. The clinician praises the patient for effort expended at each step and for outcome. If the patient does not succeed at most steps, the steps are reevaluated and more realistic, smaller steps may be added. During this process the clinician needs to moru'tor suicide risk. Monitoring suicide risk. Statistically, people with HIV and depression exhibit more suicidal behaviors and

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attempt suicide more frequently than the general population or people with other life-threatening illnesses (Atkinson, et al., 1988; Breitbart, 1993; Cote, Biggar, & Dannenberg, 1992; CDC, 1990; Marzuk et al., 1988; M c K e g n e y & O ' D o w d , 1992; P u g h , O ' D o n n e l l , & Catalan, 1993). Therefore, it is important for clinicians to routinely evaluate suicide potential (Copeland, 1993; Cote et al.; O ' D o w d , B i d e r m a n , McKegney, 1993; McKegney & O'Dowd, 1992). Breitbart (1993) reports that an AIDS diagnosis and persistent pain are associated with the highest rates of suicide, euthanasia, and requests for assisted death. Fatigue, symptom distress, depression, and dementia also increase suicide risk (Perry, 1990; Saunders & Valente, 1996; Schneider, Taylor, Hammen, Kemen3~ & Dudley, 1991). Further, a review of the literature suggests that it is dangerous to assume prematurely that suicidal ideas among people with AIDS represent a rational act, because suicidal impulses may be a cry for help and may be related to physical symptom distress or psychiatric comorbidity (e.g., depression, substance abuse, or anxiety) (Breitbart, 1993). Guidelines for management of suicidal patients with HIV disease have been previously published. For more information on the management of the HIV-infected patient who is suicidal, refer to Valente and Saunders (1994). Clinicians must evaluate suicide risk and monitor a patient's reasons for living, wishes for death, and plans for suicide (Wallack, Snyder, Bialer, Gelfand, & Poisson, 1991). If suicidal, patients should be asked for specific details about the plan, method and means for suicide, and any plan for rescue. People with an imminent and lethal suicide plan typically require hospitalization, safety precautions, and a psychiatric evaluation (Bongar, Manis, Berman, Litman, & Silverman, 1993; Valente & Saunders, 1994). Helpful questions include asking what prompts suicidal feelings now, what a suicide attempt would accomplish, and what deters them from suicide. To prevent potential suicide methods such as gunshot or poisoning (e.g., barbiturates, hypnotics), handguns and medications s h o u l d be r e m o v e d and safely stored (Berchick & Wright, 1992; Bongar, 1992). Depressed or suicidal people need to know that treatment will typiJANAC Vol.8, No. 1, January-Februar~1997

cally relieve depressive symptoms. Counseling should encourage the patient to express and explore the pain, grief, loss, fears, and other emotions. Depressive side effects of medications should be monitored. Self-help and social support. Self- help books provide a useful adjunct to treatment. Feeling Good (Burns, 1990) is an inexpensive a n d easy to read p a p e r b a c k that explains how to evaluate and reduce depression using cognitive strategies and offers screening scales for depression. Increasing social support from family, friends, and community resources is an important strategy for reducing depression (Cabaj, 1994). Particularly among minority groups, depressed patients who received visitors or who were involved in religious or spiritual activities, senior centers, or volunteer activities recovered more rapidly than others with low social support. Institutionalized people can use letter writing and the t e l e p h o n e to increase their social interaction. Ethical Issues

Clinicians who treat HIV-related pain or symptoms need to examine their attitudes toward suicide and be prepared to respond therapeutically to patients who potentially pose serious ethical dilemmas (Lipman & Battin, 1996; Satmders, 1994). Slome, Moulton, Huffine, Gortner, and Abrams (1992) examined physicians' attitudes toward assisted suicide in the context of AIDS, using a sample of San Francisco based physicians. Twenty-three percent of the sample said they would be likely to grant the patient's initial request for help to commit suicide. Responding to an initial request without a thorough evaluation tends to overlook the need to provide palliative care, treat depression, and evaluate capacity for rational decision making. Traditional and Controversial Views of Suicide

Traditionall)r suicidologists assert that suicide is typically an irrational behavior and a cry for help (Bongar, 1992). They advise clinicians to understand a patient's 61

Managing Depression Among People With HIV Disease

psychodynamics, motives, suicide risk, ratior~ality, and options for improving quality of life. They argue that most suicidal patients cannot make rational choices because their cognitive processes are impaired by depression, pain, d r u g intoxication, or d e m e n t i a impaired thinking. Moreover, the current law holds clinicians accountable for preventing suicide if it is foreseeable and for evaluating and treating pain, depression, and suicide (Bongar). Advocates of assisted suicide challenge this traditional view of suicide (Quill, 1993). In their respective statements, the Academy of Hospice Physicians call for improved palliative care and pain relief and join with the American Nurses Association, the Oncolowy Nurses Society, and the American Cancer Society in opposing assisted suicide and euthanasia (Lipman & Battin, 1996). People with AIDS have questioned these traditional views about suicide prevention and asserted that PWAs are rational and deserve the right to die (Jamison, 1992). These challenging bioethical dilemmas in assisted death, suicide, and euthanasia may elicit conflicts among a clinician's values and duties (Valente & Saunders, 1996; Saunders & Valente, 1993). In our survey research (Valente, Saunders, & Grant, 1994) we found that many oncology nurses believe they have conflicting duties regarding patients who plan suicide. Nurses report they experience conflicts between respecting autonomy and providing safety by sounding the alarm about suicide. In addition, nurses cite their fear of having inadequate knowledge and skill to prevent suicide, their concern about the weight of their professional obligations, and their personal experiences with loved ones who have committed suicide. A case study of Gerry (see box) exemplifies the ethical dilemma faced by clinicians when a patient requests support in committing suicide. Rational suicide. The clinician's duty to a rational, suicidal person with a life-threatening illness is controversial. Clinicians can have a meaningful role in preventing impulsive suicidal behaviors that are a cry for help. Clinicians also act as advocates for people who are terminally ill, demonstrate rational thinking, and seek assistance in dying (Valente & Saunders, 1996). Although 62

some states have drafted legislation to legalize the physician's role in assisted dying, clinicians in other states have no such protection. Most states hold that assisted suicide is illegal, unethical, and unacceptable. Advocacy may include encouraging open and candid discussions with patients and significant others about dying. Clinicians should ensure that a patient's family and loved ones, particularly children and adolescents, understand that suicide is not a solution for temporary problems. Patients may also need referrals to legal resources and education. Because people often fear that medical technology will keep them alive and in pain, thev need information about advance directives, withdrawing food or fluid, hospice care, improved palliative care, and protection from suicidal impulses. Determining the rationality of a patient's decision to commit suicide and the mental capacity for free choice is challenging (The Hastings Center, 1987). Capacity to choose can fluctuate among people with HIV/AIDS, especiaUy in the presence of dementia. The diagnosis of depression or dementia, however, does not necessarily disqualify patients from participating in end-of- life decisions. Factors that might influence a patient's capacity to choose include the side effects of medication and treatable illnesses that limit rational thinking. Providing the patient with the best possible circumstances for participating in decisions is the clinician's responsibility, even when these involve refusing treatments or making end-of- life decisions. Proponents of rational suicide recommend evaluation of the following criteria for terminally ill adults who plan suicide: 1) a mental status examination showing clear mental processes without depression, 2) motivation for suicide that society would understand; 3) capacity to understand consequences of the planned suicide (Siegel, 1986); and 4) evidence that options have been thoroughly explored before suicide is selected (Siegel, 1986). Yet, these criteria do not guide clinicians through complex situations. For example, one patient with AIDS planned to commit suicide when her pain was overwhelming, her quality of life unacceptable, and her life meaningless. She was receiving psychotherapy and pharmacological treatment for her depression, and she demonstrated dear JANAC

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Case Study Identifying data and history Gerry is a divorced, 39-year-old teacher and scientist who is diagnosed with advanced AIDS with many past opportunistic infections. He lives with his lover and receives home care nursing. He complains of increasing distress from diarrhea, pain, shortness of breath, fatigue, chest pain, headaches, oral pain, and painful peripheral neuropathy. Most of these problems are now well- managed except for shortness of breath, fatigue, and pain. He consistently uses oxygen but remains dyspneic. He experienced severe anxietv re~ardine, hi~ abiYitv I~, breathe and his dependence on oxv~zen but was not evaiuatecl or treater1 lot a~txaety. Recent psychosociaI symptoms Recently, since a good friend died, Gerry has lost interest in his garden and cats and says that his favorite topic, gossip, is even boring. He has difficulty concentrating and sleeping. He feels guilty that he does not see his c h i l d r e n more and w i s h e s t h e y w o u l d visit. Previously he refused AZT and DDI because of side effects, but he feels guilty that his refusal probably has disappointed his physicians. He has mentioned death and suicide episodically since his HIV diagnosis. During bouts of illness, he talks about wishing to die because he does not wish to burden his lover and children. He argues that he deserves the right to die with dignity.

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Current medical treatment A regimen of 120 mg oral sustained release morphine every 12 hours with either carbamazepine or sodium valproate failed to control pain. He received limited relief from a 4- week trial of epidural narcotics given through a lumbar epidural catheter. He takes dalmane for insomnia. He barely survived a recent episode of status epilepticus. His grand mal seizures are now controlled with phenytoin 200 mg tid. He has experienced episodes of delirium and currently has some memory loss and colgusion.

Psvchiatric history and treatment Over tile pa~t years, C,errv has been depvc>~cd -,c~~, iimes. Eacia thne, i~i>depressu~n secmuu LUHL cided with increased severity of H1V disease. Each tim~:. Gerry responded to cognitive psychotherap): therapcuti~ activities, antidepres~nts, and increased ~x~ialsupfx~rt and resources. His scores on the BDI mirrored his depressive symptoms and recovery..The last time he was depressed, he seriously considered ECT instead of antidepressants. Currently, he says he feels depressed and too tired to go on. He asks his nurse and physician to discontinue his seizure medications so he may die quickly of natural causes. Alternatively, he asks for a continuous morphine drip that he can control by turning up the rate, volume, and dosage.

63

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Table 5. Questions for Assessment of Rational Suicide

1. The purpose and motives of the person considering suicide. Is the person making a request for help? Why is the person consulting a health professional? Is the request for help in suicide a request for someone else to decide? Is the suicide plan financially motivated? What has kept the person from committing suicide so far? Does the person fear becoming a burden? 2. Stability of request How stable is the request? Has suicide been planned for a long time or is it a response to a recent event. 3. Consistency. Is the request consistent with the person's basic values? 4. Are the medical and nonmedical facts cited in the request accurate? 5. Consequences of the act. Has the person considered the effects of his or her suicide on others? 6. Suicide plan and options: How far in the future would this take place? Has the person picked a method of suicide? Would the person be willing to tell others about his or her suicide plan? Does the person see suicide as the only way out 7. What societal and cultural influences are shaping a person's choices? 8. Are the person's affairs in order? Have arrangements beenmade for a funeral or durable power or attorney in case the suicide attempt is not fatal. In most states a health professional's relationship with a patient implies a legal and professional duty to refrain from assisting suicide. Clinicians may not knowingly administer a lethal dose of medicationor help the client plan a lethal dose. 9. Has the person discussed this choice with family and close friends and considered the effects and stigma of a suicide on other persons? 10. Has the person made the decision without undue coercion from others? 11. Has the person demonstrated a sound decision- making process with mental competence, non- impulsive consideration of alternatives, and congruence between suicide and personal values? 12. Have all options for palliative and psychiatric care been considered? Terminally ill patients with suicide plans deserve thoughtful evaluation of their rational and irrational requests and appropriate treatment options for their depression, pain, or symptom distress. Clinicians need to understand the legal and ethical issues and criteria for evaluating rational suicide. ~.~ _ ..... ~-_~i~Z..... 'iii ~,~ ........ ~.~:=_:~.... ............ZZ2~L......... ~~ ~ Z~........................................ --7 Z~~-~\'~7~-TZ~ Note. From "Rational Suicide: How Can We Respond to a Request for Help?" by M. Battin, 1991, Cr/s/s, 12(2), pp. 73-80, and "Cases and Commentaries on Assisted Suicide and Euthanasia," by J. Werth, J. Valente, & J. Saunders, 1996, Journal of Pharmacologicaland Symptom Control, 4, pp. 243-290. Published with permission in Valente & Saunders (1994). JANAC 5(6), 28.

t h o u g h t processes about the nature, meaning, a n d conseq u e n c e s o f h e r s u i c i d e p l a n a n d all o t h e r o p t i o n s . However, it is difficult to determine w h e t h e r she met the 64

first criteria. She h a d m i l d to m o d e r a t e d e p r e s s i o n b u t h a d t h o u g h t clearly a b o u t t h e o p t i o n s , m e a n i n g , a n d c o n s e q u e n c e s of h e r suicide. M o r e o v e r , t h e s e criteria JANAC Vol.8, No. 1, January-February, 1997

address the individual but d o not consider loved ones, family, or friends. Table 5 provides clinicians more extensive guidelines for the examination of rationality when a patient is considering suicide. Summary Major d e p r e s s i o n is one of the most c o m m o n a n d treatable psychiatric disorders among HIV-infected people. L o w - g r a d e depressive s y m p t o m s occur frequently in HIV-positive individuals, but depressive disorders are m o s t c o m m o n a m o n g t h o s e w i t h past d e p r e s s i o n s , chemical dependency, limited social support, advanced disease, a n d p o o r l y m a n a g e d pain. M a r z u k (1991) reported that 50% of people with AIDS who committed suicide were significantly depressed and 40% had seen a p s y c h i a t r i s t w i t h i n f o u r d a y s b e f o r e t h e i r suicide. Antidepressants, counseling, education, and cognitive strategies effectively reduce depression. Antidepressants effectively treat depression, although research on HIV populations is limited. Electroconvulsive therapy is effective for severe or refractory depression a m o n g people with HIV disease. Routine screening for depression is r e c o m m e n d e d for people with HIV disease because of their high risk for depression and suidde. W h e n the pain of living is greater than the idea of dying, people consider suicide, perhaps as a response to persistent pain, depression, dementia or unacceptable quality of life. When a patient says, "I would be better off d e a d , " a t h o r o u g h assessment of suicidal intent will identify distressing s y m p t o m s that require treatment s u c h as p e r s i s t e n t p a i n , d e p r e s s i o n , or d e m e n t i a . Clinicians cannot assume that suicide risk is absent when suicide is not mentioned because many patients will not spontaneously mention suicide unless asked. In patients with HIV, depression and suicide risk should be roufinely monitored, evaluated, and treated. Appreciation is extended to Victor Eleftherakis, BSN, RN, and Peter Katsufrakis, MD, for review and DarteUa Johnson for assistance with this manuscript. This project was supported in part by grants NR 00003, National Institute of Nursing Research and the Oncology Nursing Society. Acknowledgment.

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