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ORIGINAL ARTICLES |
From the Department of Psychiatry (J.G.R.), College of Physicians and Surgeons, Columbia University; New York State Psychiatric Institute (J.G.R., G.J.W.); and The Eleanor and Lou Gehrig MDA/ALS Center (M.D.), New York Presbyterian Hospital, New York, NY.
Address reprint requests to: Judith Rabkin, PhD, New York State Psychiatric Institute, No. 51, 1051 Riverside Drive, New York, NY 10032. Email: jgrl{at}Columbia.edu
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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METHODS: Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status.
RESULTS: Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient’s distress as well.
CONCLUSIONS: Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.
Key Words: amyotrophic lateralsclerosis • depression • assisted suicide • caregiver
Abbreviations: ALS = amyotrophic lateral sclerosis; ALSFRS = ALSFunctional Rating Scale; BDI = Beck Depression Inventory; BHS= Beck Hopelessness Scale; DSM-IV = Diagnostic andStatistical Manual of Mental Disorders, fourth edition; FVC = forced vital capacity; SAHD = Schedule of AttitudesToward Hastened Death; STAI = Spielberger Trait Anxiety Inventory; VAS = visual analog scale.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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In the clinical literature, some commentators have noted the lack of distress and the presence of unexpected cheerfulness and stoicism among patients with ALS (2, 3), although others qualify such observations. Lishman (4), for example, notes that "the majority of patients appear to show little by way of psychiatric disorder, except perhaps for understandable depression due to their progressive incapacitation."
The available research literature on rates of depression and distress among patients with ALS is both limited and inconsistent. Almost all studies have relied exclusively on self-report scales rather than clinical assessments. The one important exception is the study of Ganzini et al. (5), who assessed clinical depression (axis I disorders) using the Diagnostic Interview Schedule. They found that 11% of 100 ALS patients had current major depression. Other investigators have administered self-report scales to measure depression, most often the BDI. In the three studies reporting scale scores, mean BDI scores (10.6, 12.9, and 13.0) all fell in the range of mild depressive symptomatology (6, 7, S. Albert, personal communication). In other studies using various self-report scales, with sample sizes ranging from 16 to 52 ALS patients, reported rates of depression have ranged from 44% to 75% (6, 8–11).
In addition to reporting overall distress rates, Hogg et al. (9) observed that those who were more physically impaired were more depressed, whereas those with more severe speech difficulties were more anxious. They also found that patients who relied less on denial and were more accepting of their illness were less depressed, in contrast to other studies (1), in which denial seemed to serve an adaptive role.
Overall, most studies assessing prevalence of depression among patients with ALS have significant limitations in terms of sample size, reliance on self-report, or use of nonstandardized measures. Results are mixed, with the preponderance of the available evidence suggesting relatively low rates of clinical depression but with some investigators reporting extremely elevated rates.
The relationship between depression and distress vs. disease progression and severity has been assessed by a handful of investigators with inconsistent findings. Montgomery and Erickson (11), in their cross-sectional study using the Minnesota Multiphasic Personality Inventory, found no association "between psychometric depression and any measure of ALS disease severity." Examining 9 patients with severe disease who were receiving either invasive or noninvasive ventilation, Winterholler et al. (12) found that two-thirds "had episodes of depression, mostly due to the families’ burden." In contrast, McDonald et al. (7) followed up 144 ALS patients for 18 months with 3-month assessments and reported that as many patients showed increased as decreased "psychological well-being" over time on their 10-scale composite measure. Furthermore, when the psychological well-being of the 18 patients in this sample who received ventilatory support was compared with that of the rest of the patients, there was no difference in results of the distress measures (13). However, when the entire sample was divided into quartiles based on a composite score of well-being, those with the lowest level of well-being at baseline had a significantly elevated risk of dying and a shorter survival time than those with the highest levels of well-being.
Only a few studies have evaluated possible protective and risk factors associated with distress and depression among patients with ALS(5, 7, 13, 14). Protective factors include religious faith and family or other social support. Risk factors include illness symptoms, suffering and pain, need for ventilatory assistance, and perceived family burden. The limited findings are suggestive but require further documentation.
Given the inexorable and devastating nature of ALS, the issue of hastening death becomes salient. The disease has been in the forefront of such debates, as seen in Dr. Kevorkian’s assistance in an ALS patient’s death that was broadcast on 60 Minutes (March 1999) and the subsequent murder conviction of Dr. Kevorkian for this death. Ganzini et al. (5) assessed attitudes toward assisted suicide in a sample of 100 ALS patients in Oregon, where legislation for its legalization was then pending; 56% said they would consider assisted suicide as a future option. This is only slightly higher than the 48% of the general population who expressed an interest in assisted suicide when asked to contemplate various scenarios of their own death (15). Compared with the other 44% in the sample, those who would consider assisted suicide had a higher level of education, had higher scores on hopelessness measures, were less likely to be religious, and rated their quality of life lower. However, there was no difference in the prevalence of depression between the two groups. In contrast, Breitbart et al. (16) evaluated attitudes toward assisted suicide among 378 ambulatory HIV-positive patients, 90% of whom had AIDS-defining conditions. In their study, interest in assisted suicide was associated with modest elevations in self-reported depression, hopelessness, and dearth of social support.
Family caregivers of patients with ALS are themselves deeply affected by the illness. The extensive literature on psychiatric and physical morbidity associated with caregiving has focused largely on caregivers of patients with dementia, with a handful of studies concerning other illnesses (17–20). Schulz et al. (21) identified 41 studies measuring health outcomes of dementia caregivers; most included measures of distress and depression. Elevated rates of depressive symptoms were found in virtually all studies.
The impact of ALS on family caregivers has been evaluated in a handful of studies presented at conferences. A report based on 98 patients and families from the Cleveland Clinic Foundation found that primary caregivers spend a median of 11 hours/day caring for patients despite having home care assistance; half reported feeling "physically and psychologically unwell" (22). Financial distress was common, both because caregivers often had to reduce or discontinue employment and because health insurance almost never covers all expenses, which can reach $150,000 for patients who require ventilatory assistance and are cared for at home (23, 24).
We could locate only two studies that examined quality of life of spousal caregivers of ALS patients. Bromberg and Forshew (25) conducted a pilot study of 15 patients and 14 spouses; the patients had nearly normal pulmonary function at the time of assessment. In a semistructured interview (Schedule of the Evaluation of Individual Quality of Life), they found a more pronounced impact of ALS on the quality of life of caregivers than patients. Woolley and Ringel (26) evaluated more than 800 primary caregivers every 3 months for 9 months using the 36-item self-report Quality of Life Scale (developed for the RAND Medical Outcomes Study) and additional questions. Overall, caregivers reported both physical and mental health well-being scores close to those of the general population. Over time, both scores declined as the patient’s health declined, with mental health more affected. In contrast, the authors also reported high life satisfaction, which did not change despite progression of the patient’s illness.
We designed this exploratory study to ascertain the prevalence of clinical depression and distress and their correlates among ALS patients attending a tertiary care ALS clinic and to assess caregiver adjustment. Our questions were as follows: 1a) How prevalent are clinical depression and distress? 1b) Are depression and distress related to the degree of ALS illness progression and functional impairment? 2) Is distress associated with decision-making about end-of-life interventions and their timing? 3) Is there an association between depression in the caregiver and depression in the patient?
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METHODS |
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Measures
A semistructured interview included queries about sociodemographic, situational, and medical information, preferences for medical interventions, attitudes about hastened death, and psychiatric assessment using the depression module of the Structured Clinical Interview for DSM-IV (27). Interviewers also assessed social support and environmental resources on five-point scales with explanatory anchors, following axis IV of DSM-IV (28).
Both patients and caregivers were asked to complete a packet of self-report scales and questionnaires. These included the 21-item BDI (29), which is generally regarded as the gold standard among self-report scales of depressive severity. In addition to calculating total score as is conventional, we computed for patients a "cognitive subscale" score, leaving out the six items concerning somatic symptoms (insomnia, fatigue, weight loss, loss of appetite, preoccupation with health worries, and diminished libido), which also can be manifestations of the medical illness. The self-report 20-item STAI (30) was also administered, as was the seven-item Physical Fatigue subscale of the Chalder Fatigue Scale (31).
Other self-report scales included the BHS (32), which measures outlook about the future (a sample item is, "I look forward to the future with hope and enthusiasm"), and Endicott’s 15-item Quality of Life Enjoyment and Satisfaction Questionnaire, short form (33), which asks about satisfaction with different domains, such as social relationships, finances, and recreational activities. Holland’s 15-item Religious Beliefs Inventory (34) was administered. We also included two VASs used by Ganzini et al. (5), in which the patient was asked to rate his or her suffering and pain on six-point scales and caregivers were asked to rate the patient on the same scales.
The SAHD (35), a 20-item true/false scale originally developed for patients with HIV and/or AIDS, was administered to patients only (a sample item is, "Because my illness cannot be cured, I would prefer to die sooner rather than later"). To this scale, we added two questions asking specifically about hastened death and five questions inquiring about actual steps taken to prepare for death, such as signing a do not resuscitate order. Reported scale scores are for the original 20 items.
Caregivers were administered a questionnaire including six items from the Zarit Caregiver Burden Scale (36) and Folkman’s 4-item measure of finding positive meaning in caregiving (personal communication).
Indices of medical status included the ALSFRS, 37), a widely used 10-item, clinician-rated scale based on the patient’s report of levels of function, including breathing, salivation, speech, and climbing stairs. Scoring is based on a five-point scale (4 = "normal" and 0 = "cannot do"). We also included spirometry measures of FVC (predicted and raw scores), which assesses actual pulmonary function. Scores below 60% of predicted values signify a high likelihood of death within 6 to 12 months (38). We also used the Karnofsky Performance Index (39), a clinician-rated scale indicating expected level of overall physical functioning in the coming week. For all functional measures, higher scores indicate better function.
Procedures
Patients and caregivers were first approached by a member of the ALS center staff to ask whether they would agree to participate in a 40- to 50-minute interview about coping with serious illness, while waiting to see their clinician. If they agreed, a licensed clinical psychologist conducted the interview after describing the nature of the study, its possible risks and benefits, and obtaining written informed consent. Self-report scales were completed after the interview, if time permitted, or were taken home with a stamped, addressed envelope.
Statistical Analyses
Statistical analyses included Pearson correlations, univariate analyses of variance, and t tests for group comparisons. Statistical significance was set at 
= 0.05, and all tests were two-tailed.
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RESULTS |
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As shown in Table 1, this is a heterogeneous sample. Mean age was 56 years (range, 34–78 years); 55% were male, and 80% were white. Forty-seven percent had a college or graduate degree, and 32% had a high school diploma or less. All but two had health insurance (80% had private insurance), but only 18% had paid home health attendants. Mean time since ALS diagnosis was 14 months, including one outlier who was diagnosed 64 months earlier. Eighteen used wheelchairs at least some of the time, three had feeding tubes, four used computers to communicate, and eight others had severely limited speech (according to their ALSFRS score). Twenty-two percent had a predicted FVC of 60% or less, indicating a life expectancy of less than 1 year. Karnofsky scores of 70 or less were given to 74% of the sample, indicating "inability to carry on normal activity."
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Prevalence of depressive and anxiety symptoms.
The mean BDI score was 11.6 (SD = 8.3), which is in the range of mild depression and is higher than norms for the general population. For research purposes, a cutoff score of 13 on the BDI is used to identify patients with significant depressive symptoms: In this sample, 28% had scores greater than 13. However, this score includes six items about somatic symptoms of depression, which could plausibly be attributed to medical disease, and thus may overestimate depression.
The mean trait anxiety score on the STAI was 40 (SD = 11), which is somewhat higher than the norms of 34 (SD = 8.9) and 32 (7.8) for male and female "working adults," respectively, in the 50- to 69-years-old range (30). However, the ALS patients expressed less anxiety than psychiatric patients (who had a mean score of 47) and a level equivalent to that of general medical patients (mean score of 41).
Correlates of anxiety and depression.
Symptoms of anxiety and depression were highly correlated (STAI and BDI total score correlation coefficient = +0.72). All measures of distress were positively intercorrelated, as shown in Table 2. Measures of both depressive and anxiety symptoms are significantly positively correlated with other psychological (hopelessness and desire for hastened death) and physical (pain, suffering, and fatigue) manifestations of distress. Both anxiety and depression scores were highly and inversely associated with life satisfaction (r = -0.65).
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End-of-life plans and correlates.
During the semistructured interview, patients were asked whether, if needed to prolong their life, they would wish to have any of the following interventions: noninvasive (intranasal) ventilation, feeding tube, tracheostomy with mechanical ventilation, or cardiopulmonary resuscitation. Sixty-five percent said they would want noninvasive ventilation, 42% would want a feeding tube, and 26% would want either tracheostomy or cardiopulmonary resuscitation. We looked at the relationship between measures of psychological distress, pain, suffering, hopelessness, quality of life, religious faith, and intentions regarding life-sustaining interventions. Depression and distress were significantly correlated only for the most modest intervention, noninvasive ventilation. Those who planned to refuse noninvasive ventilation were older, had significantly more depressive symptoms on both self-report and clinician assessments, and reported more pain and a lower quality of life (trend).
The only correlate of refusal of tracheostomy was extent of religious conviction; those who refused tracheostomy had higher scores, endorsing such items as, "One’s life and death follows a plan from God." No measures of distress or depression were associated with refusal of either feeding tubes or cardiopulmonary resuscitation.
Attitudes toward hastened death.
The mean score on the SAHD was 3.7 (SD = 3.4). As shown in Table 2, statistically significant positive correlates of scores on this scale were depressive symptoms, hopelessness, fatigue, suffering, and anxiety. Higher scores on the SAHD were negatively correlated with strength of religious beliefs, social support, and quality of life. Overall, desire for hastened death was positively associated with indices of psychological distress, negatively associated with psychosocial resources, and unrelated to medical condition.
Affairs in order.
We added four questions intended to reflect behaviors that could reflect desire for hastened death: whether the respondent had written a will, "put my affairs in order," signed a do not resuscitate order, and made spiritual preparations to die. These "action" items turned out to be unrelated to SAHD scores and inversely related to measures of distress (BDI, r = -0.33, p < .03; anxiety, r = -0.27, p = .08).
Assistance in dying.
In the interview, patients also were asked, "Are there circumstances in which you would consider asking for a prescription for medicine whose sole purpose was to end your life?" Of 50 patients who were asked this question, 34% said "yes," 8% were undecided, and 58% said "no." Those who said yes did not have more symptoms of depression, anxiety, or hopelessness and did not report more pain and suffering or poorer quality of life than those who did not endorse this option. The only difference was their elevated score on the SAHD (mean = 6.0 vs. 3.5, t = 2.19, df = 48, p < .04). Reasons for not considering taking steps to end life were religious beliefs and, much less frequently, concerns about risk to life insurance that might penalize family members, to whom patients already felt enormous obligation.
A single item concerned steps actually taken to hasten death: "I have already asked a friend or family member to help me end my life at some point." Five patients (10% of those completing self-report scales) had done so. Only one of the five had a current depressive disorder.
Mood and illness progression.
The ALSFRS and FVC (predicted and raw scores) were used as indices of impairment; higher scores signify better functioning. Because the direction of relationships with other variables of both measures is similar, only ALSFRS data are presented.
Better function was inversely correlated with the total BDI score (which measured severity of depression). However, when the six somatic items of the BDI (eg, fatigue and weight loss) were deleted, this relationship was no longer statistically significant (r = -0.23, p = NS).
Better functional level (ALSFRS scores) was positively correlated with patient ratings of life satisfaction and enjoyment (r = +0.46, p = .002) and clinician-rated adequacy of environmental resources (r = +0.46, p = .002). The only distress measure inversely correlated with current function was pain, and this was most often reported with declining physical function (r = -0.29, p = .05). The Karnofsky Performance Index was highly associated with the ALSFRS score (r = +0.76, p < .001). Perhaps surprisingly, suffering, hopelessness, and wishes for a hastened death were not related to degree of physical impairment in this sample. Time elapsed since diagnosis was inversely correlated with physical functioning but not with measures of distress.
Change Over Time.
Twenty patients were reinterviewed an average of 5.5 months later (range, 3–8 months), with repeated assessments of physical function (ALSFRS and Karnofsky Performance Index), depressive symptoms (BDI), hopelessness (BHS), pain and suffering (VASs), and quality of life (Endicott Quality of Life Enjoyment and Satisfaction Questionnaire). Progressive decline in physical function was found, with 8 of the 10 ALSFRS items showing statistically significant (p < .05) or trend (p < .10) changes. Patients had more trouble breathing, speaking, swallowing, and walking. Total ALSFRS scores over time as well as Karnofsky scores also reflected disease progression. However, none of the measures of psychological adjustment showed increasing distress over time for the sample as a whole, as shown in Table 3. When asked in the interview whether their mood had changed over time, 15 remained nondepressed, one remained depressed, and four reported changes; of these, two reported improved mood, and the other two reported worsening mood. Overall, in the aggregate, illness progression was not accompanied by increased psychological distress.
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Prevalence of clinical depression.
Eighty-one percent had no clinical depression, 6% (N = 2) had current major depression, 6% had subthreshold major depression, and 6% had minor depression.
Prevalence of depressive symptoms.
The mean BDI score was 8.9 (SD = 8.0), which is slightly lower than that of patients; 21% scored above the cutoff point of 13.
Hopelessness.
The mean score on the BHS was 6.5 (SD = 4.8). Again, 21% scored above the cutoff point of 8.
Caregiver burden.
Higher scores, signifying greater perceived burden, were significantly correlated with measures of depressive symptoms, fatigue, lower quality of life, and lower scores on the religious beliefs scale (Table 4).
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Relationship Between Distress Expressed by Patients and Their Caregivers
Distress levels were highly correlated between patients and caregivers despite the small size of samples (N = 21). Correlation coefficients between patient and caregiver scores on the BDI, Endicott Quality of Life Enjoyment and Satisfaction Questionnaire, and STAI were +0.68, +0.65, and +0.55, respectively (p < .01 in all cases).
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DISCUSSION |
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The distress measures we administered reflect low levels of psychiatric impairment but fail to capture the undaunted spirit of the vast majority. When we asked patients how they managed to persevere in the face of such adversity, they answered, as one patient put it, "When my back is to the wall, my face is to life." (This message was typed by a man who had lost the ability to speak, to swallow, or to walk unaided. He lived overseas and flew to New York alone for medical care.) Older patients often spoke of having lived a full and rewarding life and of the fact that everyone dies sometime. One 73-year-old man, who had fallen during the night before this interview and had laid on the floor for 2 hours because he was unable to get up unassisted or call for help, was upbeat and persistently cheerful. He explained, "I’ve been living on borrowed time for 50 years. I was in five major campaigns in World War II: in Africa, two in Italy, on Omaha Beach, in the Battle of the Bulge. I survived all that. I have friends who died and I’m lucky. I’m still here."
Another interesting finding concerns the relationship between distress and depressive symptoms and anticipated end-of-life wishes. Most patients indicated that they would agree to noninvasive ventilation, 42% would agree to feeding tubes, but only 25% would accept either tracheostomy with mechanical ventilation or resuscitation. Depressive symptoms were associated only with refusal of the least invasive intervention (noninvasive ventilation).
Desire for hastened death, as measured by a self-report assessment, was positively associated with depressive symptoms, hopelessness, suffering, and fatigue, as Rosenfeld et al. (35) found in patients with AIDS. We did not replicate their finding of a relationship with severity of medical condition.
We added four items to the SAHD that we conceptualized as behavioral manifestations of interest in hastened death (eg, "I have put my affairs in order"). Not only was the score on this four-item scale uncorrelated with SAHD scores, but it was significantly inversely related to measures of psychological distress. Taking active steps to prepare for death seems to represent positive coping rather than psychological distress in this sample of terminally ill patients.
We found that willingness to consider asking for a lethal prescription at some future point was not associated with depression or distress. These results agree with Ganzini et al.’s (5) findings about attitudes toward assisted suicide. Refusal of life-sustaining interventions and willingness to consider assisted suicide seem to be influenced by both secular and religious beliefs and values independent of mood states and suffering. Thus, one can wish for a hastened death and also believe it is morally wrong to take steps to make this happen.
Among caregivers, two findings stand out in this small sample. First, caregivers were as likely to be clinically depressed as patients. Unfortunately, access to psychiatric treatment seemed to be inversely related to caregiver burden: Those who felt they couldn’t leave their ill spouse’s side were typically the most upset. For example, one 37-year-old woman with three children spends 24 hours a day being a vigilant caregiver. She was severely distressed, but when counseling was suggested, she said, "I feel guilty about leaving him alone just to get groceries; I could never take the time to do something just for myself." Their health insurance did not cover home care.
Second, perceived caregiver burden was positively associated with finding positive meaning in caregiving, suggesting that the latter is an adaptive and effective coping strategy. Finding positive meaning in caregiving is conceptualized by Folkman as a form of meaning-based coping (personal communication), so the significant correlation with burden, which we observed, is logical rather than counterintuitive, as it might seem at first. That is, the experience of burden would actually "cause" or activate the perception of positive meaning.
Finally, the concordance of distress level between patients and caregivers is high, ranging from +0.55 to +0.72 on measures of depressive severity, anxiety, and quality of life. This reflects findings reported in studies of other couples coping with a chronic disease (40–42) and suggests that attention to the mental health needs of caregivers may not only relieve their own depression but may alleviate the patient’s distress as well. Perhaps observing the caregiver’s distress adds to the perception of being a burden on the part of the patient and thus exacerbates his or her own distress.
Several limitations restrict the generalizability of the findings of this study. First, all patients were sufficiently ambulatory to come to a medical clinic. Second, the large majority were participating in a clinical trial, which may selectively attract more optimistic patients. Such patients often have made more effort to educate themselves about their illness and tend to be more involved in their medical care. The sample sizes were small (although not in comparison with other studies reported in the ALS literature), and the study was predominantly cross sectional. Nevertheless, it is the first study to conduct formal psychiatric evaluations using clinician-administered structured diagnostic interview methods, and the sample includes a broad range of patients in terms of age, social class, personal and social resources, and illness stage.
The results generally match and amplify the findings reported in the handful of published studies evaluating the psychological state of patients with ALS. Interestingly, we found comparably low rates of syndromal depression and distress in two studies of men with HIV and/or AIDS conducted in the years before any effective antiviral medications other than azidothymidine (Retrovir) were available (43, 44). It would seem that clinical depression or significant depressive symptomatology is not an inevitable or even common outcome of life-threatening illness; its presence among terminally ill patients may reflect a preexisting vulnerability rather than the expected consequence of severe adversity.
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ACKNOWLEDGMENTS |
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Received for publication May 24, 1999.
Revision received August 27, 1999.
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