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ORIGINAL ARTICLES |
From the Department of Psychiatry and Behavioral Sciences (L.D.B., C.K., M.J.C., S.DiM., D.S.), Stanford University School of Medicine, Stanford, California and Pacific Graduate School of Psychology (R.W.G.), Palo Alto, California.
Address requests for reprints to: Lisa D. Butler, Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford CA, 94305-5718. Email: butler{at}psych stanford.edu
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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METHOD: Data were collected as part of a larger study (N = 125). Analyses were based on data from a subset of women who had died and for whom we had data from at least three assessments. Mean levels of mood, trauma symptoms, depression symptoms, well-being, and pain over three time points were examined: at baseline (T1), the second-to-last assessment before death (T2), and the last assessment before death (T3).
RESULTS: Results indicate that while psychological distress remained relatively constant or declined from T1 to T2, means on all measures significantly changed in the hypothesized direction from T2 to T3. Neither self-reported pain, nor the passage of time, appeared to account for these changes. Additionally, participation in group psychotherapy did not have a significant impact on this change in distress proximal to death.
CONCLUSIONS: Results suggest that specialized end-stage clinical interventions are particularly needed for cancer patients as they approach death. Moreover, intervention studies for patients with deteriorating illnesses may need to take this "spike" in psychological distress and pain proximal to death into account to avoid Type II errors in evaluations of psychological outcomes.
Key Words: psychological distress • pain • breast cancer • death • course • methodology
Abbreviations: POMS = Profile of Mood States;; IES = Impact of Event Scale;; CES-D = Center for Epidemiologic Studies—Depression;; PSOM = Positive States of Mind.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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The course of psychosocial distress in MBC patients is less well-documented, but is important for a number of reasons. First, given the poorer prognosis associated with advanced disease, MBC patients may be at higher risk for psychosocial distress (7). More advanced disease at diagnosis (3, 8), disease recurrence (9), and greater physical disability (10) are viewed as risk factors for psychological morbidity in patients with malignant disease (7). Both cross-sectional (11) and longitudinal (12) studies have found that a substantial minority of patients with advanced or metastatic disease experience clinically significant levels of depression, anxiety, and traumatic stress symptoms. Further, mean symptom levels associated with metastatic disease appear to be higher than those typically reported in studies of early-stage breast cancer patients (11). In light of the potential for greater distress in MBC patients, explication of the course of their adjustment is needed.
Second, the course of the illness and the nature of the stressors experienced by MBC patients may result in a different course of distress. For early stage patients, the primary stressors are residual and current (eg, diagnosis, treatment, continuing side effects) (13). Although such patients may be initially quite fearful about the future, the passage of time may result in a diminished anticipatory threat of death. However, for metastatic patients and their families, the stressors also include the current and anticipatory stressors of the unfolding implications of their condition and the expectation of a future characterized by impending physical decline and death (13, 14). Disease progression, additional treatments, and the psychological impact of living with a terminal illness may make the course of psychological symptoms less predictable. Moreover, for many patients, the passage of time since diagnosis and the recognition that their condition is deteriorating will signify that they are moving closer to death. In this case, it would be predicted that measures of psychological distress and pain would show a significant elevation or "spike" as patients near the end of their lives. Similarly, measures of well-being, such as the ability to experience positive states of mind (15), would be expected to show a significant decrease (or negative "spike") as these patients approach death.
Third, understanding the course of psychological distress and pain in metastatic cancer may have implications for both clinical management and for statistical methodology in psychosocial treatment outcome studies. In the first case, developing clinical interventions appropriate to the specific needs of patients as their disease progresses may improve their quality of life, even at its end. In the second case, if psychological distress and pain increase markedly before death, then treatment outcome studies that do not take these phenomena into consideration in their analyses may risk mistakenly concluding that their psychological interventions were ineffective overall. Together, these factors suggest the value of longitudinal evaluations of psychosocial adjustment in women with MBC.
In evaluating the course of psychological distress in MBC patients, several markers of adjustment are relevant. Mood disturbance (16), traumatic stress (see 17 for a review), depression (18), aspects of well-being (eg, 19) and pain (20) have all been identified as important indicators of quality of life in cancer patients. In addition, these indices have been used as outcome variables in intervention studies on the effects of psychosocial support on emotional adjustment to cancer (eg, 21–25). Identifying changes in these outcomes as patients approach death would inform clinical care and improve investigators’ ability to evaluate the efficacy of psychosocial interventions in the oncology setting.
In the present report, we investigated the hypothesis that MBC patients would report a significant increase in distress and pain and decrease in well-being as they approached death. We tested this prediction by examining aspects of adjustment in 59 MBC patients at three points over the course of their illness from study entry to death. The data were collected as part of a larger intervention study of 125 women. The findings reported here represent all available data for those women who have died and from whom we collected at least three assessments. For the present report, mean levels of total mood disturbance, trauma symptoms, depression symptoms, ability to enjoy positive states of mind, and pain were examined at study entry/baseline, at the second-to-last assessment before death, and at the last assessment before death. Analyses examined the course of different aspects of psychological adjustment over time, rather than the relationships among, or treatment effects on, these variables, which are reported elsewhere (21, 25) or will be reported in the future.
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METHODS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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Our goal was to examine the course of distress from study entry to the last assessment before death, with a particular interest in examining whether distress and pain increased and well-being decreased markedly before death. Therefore, participants from the parent study who were included in these analyses had to: 1) have died during study participation; and 2) have provided at least three psychosocial assessments before death. At the time of the present analyses, 91 women (73%) had died. Of those who died, 59 had completed three or more psychosocial assessments. The data were collected from assessments conducted at baseline (T1); at the second-to-last assessment before death (T2); and at the last assessment before death (T3) regardless of the proximity to death. The size of the sample in the following analyses changes depending on the psychosocial variable being examined (see individual measures below). Further, the time between the assessment points varies for each woman, depending on the course of her disease (ie, how often she was able to complete assessments) and how long she participated in the study before she died (ie, as noted above, the time between follow-up assessments increased after the first year).
Thus, study participants were 59 women (mean age=53.9 years, SD=9.7, range=33–73) diagnosed with MBC.1 Marital status was: 62.7% married or living together, 6.8% single, and 28.8% separated, divorced, or widowed. The ethnic composition of the sample was: 86.4% Caucasian, 8.5% Asian American, 1.7% Hispanic/Latina, and 3.4% Native American. The mean number of years of education was 15.8 (SD = 2.6, range = 12–22) and mean household income was approximately $60,000. At study entry, median time since diagnosis of metastasis was 9.6 months (M = 29.1, SD = 46.0, range = 1–245). The dominant sites of metastases were chest wall (19%), viscera (32%), and bone (49%). Forty-nine percent of the sample had received chemotherapy, and 83% of the sample had received hormone therapy.
Measures
Profile of Mood States.
The POMS (27) was used to assess mood disturbance over time. This measure was chosen because it was used in our previous study (24) where it had shown significant group differences in change over time between supportive-expressive group therapy and a no-treatment control group. Subjects were asked to indicate the extent to which 65 mood-descriptive adjectives (eg, "tense," "angry," "sad," "clear-headed") described how they felt during the past week. Ratings are made on a 5-point Likert-type scale ranging from not at all to extremely. Total mood disturbance was calculated by summing the six subscales: anxiety, depression, hostility, confusion, vigor (reversed), and fatigue. This measure has been shown to have excellent psychometric properties (27). Cronbach’s alpha for POMS Total Mood Disturbance score with the 57 women in this analysis was 0.93 at baseline.
Impact of Event Scale.
The IES (28) was used to assess levels of traumatic stress symptoms. The IES is a 15-item measure designed to assess symptoms of intrusion and avoidance that can occur in response to a traumatic experience, such as living with breast cancer. The intrusion and avoidance symptom subscales can be combined to give an IES total score. Subjects were asked to indicate on a four-point scale (where 0 = not at all, 1 = rarely, 3 = sometimes, and 5 = often) the extent to which they had experienced each of these symptoms during the past week in relation to having cancer. This measure has been used with a variety of populations, including breast cancer patients (eg, 11, 28, 29), and has been demonstrated to be valid and reliable (30). Cronbach’s alpha for IES total score at baseline with the 54 women in this analysis was 0.87.
Center for Epidemiologic Studies—Depression.
The CES-D (31) is a 20-item standardized scale used to assess depression symptoms. Participants were asked to indicate how they had felt during the past week on items such as "I felt sad." Response options were: 0 = rarely, none of the time (less than 1 day), 1 = some or little of the time (1 or 2 days), 2 = occasionally (3–4 days), and 3 = most of the time (5–7 days). Research on the CES-D has supported its validity and reliability in assessing depression (31). Cronbach’s alpha for the CES-D total score at baseline with the 56 women in this analysis was 0.91.
Positive States of Mind.
The PSOM (15) assesses the extent to which subjects are able to enjoy desirable states of mind. It contains seven short descriptions of positive feelings or experiences, including focused attention, productivity, responsible caregiving, restful repose, sensuous nonsexual pleasure, sensual sexual pleasure, and sharing. The respondent is asked to rate how much she was able to experience these feelings in the last week, with 1 = not relevant (have not wanted to experience this), 2 = easy to experience, 3 = able to experience with only a little difficulty, 4 = difficult to achieve, and 5 = unable to experience this (although I have wanted to). The scores for items 2 to 5 were reversed and all items were summed to give a total score indicating the subject’s level of ability to enjoy these positive states of mind. Cronbach’s alpha for the PSOM total score at baseline with the 52 women in this analysis was 0.69.
Pain Rating Scale.
The Pain Rating Scale has been used to assess pain in an earlier sample of MBC patients in our laboratory (23) and in analyses of the present study sample (25). It includes Likert-type items assessing "pain at this moment" (0 = not noticeable to 10 = excruciating—worst ever) and "suffering and hurt at this moment" (0 = easily bearable to 10 = agonizing—unbearable), and questions assessing the frequency and duration of pain experienced in the previous six months, the patient’s attributions regarding the cause and meaning of the pain, and whether medication has been taken for pain (currently and in the past six months). The present report used data from the "pain at this moment" item for the 59 subjects for whom we had at least three assessments of pain.
Data Analysis
Repeated measures analyses of variance were conducted to examine the course of psychological adjustment for each dependent variable: total mood disturbance (POMS), trauma symptoms (IES), depression symptoms (CES-D), ability to experience positive states of mind (PSOM), and pain. The within-subjects independent variable in each case was time of assessment (baseline [T1], second-to-last assessment before death [T2], and last assessment before death [T3]). Planned within-subject contrasts were used to examine the significance of changes between each time point. Although the present report is not intended to examine treatment effects in this subsample of the overall parent study sample, we included condition (treatment vs. control) as a covariate to control for any effects treatment might have on the course of adjustment. Before analyses, the Mauchly test of sphericity was examined for each dependent variable, and it was found to be significant in the case of IES total score (W=0.87, 
2 [2]=7.15, p<.05). After adjusting the effect and error degrees of freedom by Greenhouse-Geisser Epsilon (0.88), the significance of the IES total score results was not changed.
To examine the relationships of psychological distress to pain, a factor analysis was performed on the five study measures at baseline, and simultaneous regressions were conducted for each of the psychological distress dependent variables (POMS, IES, CES-D, PSOM) to determine whether pain levels at T2 or T3 significantly predicted psychological distress at T3, over and above the contribution of the T2 level of that psychological distress variable. In addition, to examine whether the passage of time since study entry, rather than proximity to death, might be related to increases in psychological distress and pain, correlations were conducted between the number of months in the study and the level of distress and pain at the last assessment before death.
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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Mood Disturbance
There was a significant main effect for Time on POMS Total Mood Disturbance, F(2, 110)=7.41, p<.01. Planned within-subject contrasts indicated that POMS scores did not increase significantly from T1 to T2, F(1, 55)=1.32, ns, but did increase significantly from T2 to T3, F(1, 55)=6.46, p<.05 (see Fig 1). Overall, there was a significant increase in POMS scores from T1 to T3, F(1, 55)=15.05, p<.001. Median time between T1 and T2 was 19.2 months (M=23.3, SD=15.9, range 5.1–68.9), between T2 and T3 was 5.5 months (M=6.4, SD=3.2, range 1.5–19.7), and between T3 and death was 5.4 months (M=5.9, SD=4.0, range 0.2–17.5) for this measure. There was no significant correlation between time in study and mood disturbance at T3.
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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Of note, participants reported levels of distress at baseline on two widely used measures, the POMS and the CES-D, that were somewhat lower than or comparable to those reported in previous studies with other female cancer patients (eg, 16, 32). Baseline pain levels were comparable to those reported in an earlier study of MBC patients (23). In contrast, trauma symptoms in this metastatic sample were higher than those reported in studies of early-stage breast cancer patients (eg, 29), perhaps because our participants were help-seeking and had a more threatening prognosis. In our larger sample (11), a substantial minority of patients scored above subscale cutoffs at baseline, suggesting that they needed assessment and intervention for trauma symptoms and may have warranted a PTSD diagnosis. Normative cancer sample data for the PSOM are not available; however, mean baseline levels suggest that most women were able to enjoy positive states of mind with only a little difficulty at baseline.
Methodological Implications
The findings of the present study have important potential research methodology implications. In longitudinal trials examining changes in psychological adjustment in seriously medically ill populations, it may be important to take this spike in distress and pain before death into account in the analyses. For example, in our current randomized clinical trial (21), slopes analyses were used to examine treatment effects on mood disturbance for the whole sample over the first year of study participation. In slopes analyses, individual best-fit regression lines (and intercepts) are calculated based on the data for each subject and those values are aggregated to give mean rates of change over time. In that report, we failed to find a significant treatment effect on mood disturbance when, in our primary analyses, all points of assessment were included in the creation of the slopes. However, when we excluded the final assessment for those patients who had died in the following year and recalculated the slopes accordingly, the effect of the treatment became apparent. The nonlinear impact of the assessments proximal to death on individual slopes apparently attenuated what was a significant treatment effect across assessments up until that time.
We empathize with other treatment outcome researchers who have been surprised, as we have, when substantive psychological changes observed clinically seem to "elude assessment" (22, p. 89) in the research setting. Given the present findings of a significant increase in psychological distress before death across a variety of measures, other treatment outcome researchers are encouraged to examine their data to determine whether such an increase (from patients who subsequently died) could wash out effects that would otherwise be significant, or could weaken apparent effects. Even if the effects of psychosocial treatments are only obtained up to the period just before death (when psychological distress may be overdetermined by the salience of deteriorations in health and functioning, increases in pain, and concomitant increases in death anxiety and psychological distress), such treatment effects are still real and important for improving patients’ quality of life.
Clinical Implications
Symptom levels at the last assessment before death suggest that many patients experience a clinically significant level of distress as they approach death. In particular, mean mood disturbance had increased by about half a standard deviation over baseline, and mean depression symptoms approached the clinical cut-off used to indicate the need for diagnostic screening (
16) (31). Such depression score levels are comparable to those reported by other cancer patients who did not survive more than 6 months (33). Although trauma symptoms increased significantly between the last two assessments (after significantly decreasing on average over the previous 17 months), they did not reach the levels reported at baseline. Nonetheless, over 40% of the sample still scored above cutoffs thought to indicate clinical significance. Symptom level change and particularly the change in direction, which appears to contradict the stress evaporation hypothesis (6), suggest that some patients experienced an increasing perception of life threat at that time. Mean decreases in the ability to enjoy positive states of mind and increases in pain at the final assessment appear to have less clinical significance, despite statistical significance. Patients in our sample still reported being able to enjoy positive states of mind with only some or a little difficulty and pain levels were still relatively low.
These results suggest that specialized clinical interventions are particularly needed to assist women with MBC when their health deteriorates before death, regardless of the reason(s) for these indications of deteriorating quality of life. Such interventions may assist patients in coping with issues of particular consequence at that time, including anxieties about death and dying, concerns about leaving dependent children and other loved ones behind, the increasing physical and cognitive disabilities that may accompany disease progression, and possible deterioration in social environment due to these factors. Indeed, such interventions may prove helpful for patients suffering from a variety of deteriorating illnesses including other metastatic cancers and HIV/AIDS. Although some of our sample did participate in regular group psychotherapy during the study that focused on adjusting to the diagnosis and its implications, redefining life priorities, and expressing fears and concerns, the intervention apparently was not sufficient to significantly address the needs of these patients at the end-stage of their illness even though the intervention did significantly reduce distress and pain for patients earlier in the course of their illness (21, 25).
Optimism for the efficacy of implementing specialized interventions is suggested by the findings of Linn and colleagues (34). Their program of counseling for dying cancer patients, which was aimed at reducing denial, maintaining hope, and allowing patients to speak freely and be heard, resulted in significant improvements within three months on measures of depression, life satisfaction, and self-esteem when compared with patients who had not received the counseling. Furthermore, systemic interventions may be needed in the health care setting to ensure that health care providers offer and provide adequate medications for treating pain, depression, and other physical and mental health symptoms in seriously ill patients.
Methodological Limitations
Several methodological limitations of this study should be noted. The measures used for this study all share the limitation of being self-report, and thus may be influenced by the kinds of self-report biases that have been described elsewhere (eg, 35). Also, these results were based on the assessments of women with MBC who chose to participate in a randomized clinical trial. These women may be a more distressed and help-seeking subpopulation or may differ in other ways when compared with women with this illness who would not participate in such a study, and so the appropriateness of generalizing these results to other women with MBC is not known. In addition, this study was conducted with a sample of women who were predominantly white, well-educated, and affluent. Future research is needed to determine the generalizability of these findings to women from other cultural and ethnic backgrounds and socioeconomic groups, and with samples experiencing other life-threatening illnesses. It is important to note that the final assessment was on average about 6 months before death. Given that we do not have data regarding patients’ psychological status more proximal to death, we were not able to assess the extent of change during that time, and thus, we cannot draw conclusions about psychological distress in the final few months of life.
Methodological Strengths
These methodological limitations are balanced by several conceptual and methodological strengths. First, we tested an a priori hypothesis that psychosocial adjustment and pain would show a marked worsening before death among women with MBC. Second, we tested the hypothesis on measures that are in frequent use in outcome research on persons with serious medical illnesses, including cancer and HIV/AIDS. Thus, the results of this study may be of particular relevance to investigations using the same or similar measures with similar populations. Furthermore, the fact that the results demonstrated a significant change in the assessment before death in the hypothesized direction on each of these five measures supports the generalizability of these findings across measures.
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CONCLUSIONS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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ACKNOWLEDGMENTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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NOTES |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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Received for publication March 9, 2002.
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REFERENCES |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSNOTESACKNOWLEDGMENTSREFERENCES |
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