Factors that influence consideration of hastening death among people with life-threatening illnesses.
Despite the importance of the issue, the debate over whether a right to die exists has excluded an in-depth analysis of why people would want to hasten death. An understanding of the factors that may affect such a decision must be examined as both legislative initiatives in support of PAS and efforts to improve the care of people who are dying continue. Because of the value debates, ethical dilemmas, and emotions associated with this issue, it is of critical importance to dispassionately address this issue from a research perspective. Without empirical data, the risk of policy development based on emotion that excludes the voices of those affected by such legislation is a possibility that must be considered.
Despite the strong presence of social work in the care of people at the end of life, little mention of hastening death is made in the social work literature. Social workers have written about death and dying but have only recently begun to examine the impact that patient requests for assistance in dying may have on social work practice. In 1997 NASW issued a policy statement on client self-determination and end-of-life decisions--a first step in the provision of guidelines for social workers who work with clients who may consider hastening death (NASW, 1997).
Regardless of whether policies support or restrict the practice of assisted suicide, those who work with terminally ill patients must seek to understand the factors that might contribute to such a request. If social workers and other health care providers can gain an understanding of this complex issue, more appropriate assessments and interventions for care at the end of life can be developed. Although the ethical issues associated with hastening death are of importance to social work practice, this article focuses on the role of unrelieved symptoms or problems (physical or psychosocial issues or conditions that are the direct or indirect result of a life-threatening illness) and their possible effect on the decision-making process of those who may consider hastening death.
THE EFFECT OF UNRELIEVED SYMPTOMS AND PROBLEMS
The existing literature suggests that both physical and psychosocial issues may contribute to an individual's consideration to hasten his or her death. Researchers have asserted that discussions about hastening death have neglected the role unrelieved symptoms may play in the decision-making process (Coyle, Adelhart, Folery, & Portenoy, 1990). "In the absence of such considerations, and the data necessary to evaluate them, it is possible that physician-assisted suicide and euthanasia will be requested by patients and discussed as a realistic option by clinicians, without the realization that appropriate efforts to manage symptoms and provide support to families may radically alter the issue" (Coyle et al., p. 91).
The effect of physical pain on issues related to hastening death has received some attention in the empirical literature. Studies have found that approximately 25 percent of all cancer patients die without adequate pain control despite all the knowledge necessary to prevent such an unwanted outcome (VonRoenn, Cleeland, Gonin, Hatfield, & Pandya, 1993). Many patients live in fear that their disease will progress and they will be left to suffer with no hope of respite from their pain (Stearns, Lauria, Hermann, & Fogelberg, 1993; Wanzer et al., 1989). One study found that 69 percent of cancer patients reported that they would consider suicide if they had uncontrolled pain (Levin, Cleeland, & Dar, 1985). In Coyle and colleagues' (1990) study of 90 patients with advanced cancer, 100 percent of the patients had pain in the last weeks of life, with 80 percent experiencing mild to moderate and 20 percent experiencing moderate to severe levels. Of these 90 patients, 18 acknowledged suicidal ideations, four were suicidal with a specific plan, and another four requested euthanasia.
The effect of pain on requests for hastening death is unclear. Seale and Addington-Hall (1994) found that pain was associated with requests for euthanasia, but the relationship was not statistically significant. Other researchers reported that among people with amyotrophic lateral schlerosis (ALS), suffering was correlated with pain, but pain was not related to interest in PAS (Ganzini, Johnston, & Hoffman, 1999); still others did not find pain to be related to support for PAS among people with HIV (Breitbart, Rosenfeld, & Passick, 1996).
By contrast, some have found support for a relationship between pain and hastening death or between pain and other symptoms associated with hastening death. In a study examining what type of patients physicians in Washington State seemed most willing to help hasten death, patients who received assistance--a prescription for medicine to take his or her life--were more likely than those who did not receive assistance to be in severe physical pain and discomfort (Back et al., 1996). Rosenfeld and colleagues (1996) studied people with AIDS who had pain and who did not have pain. Although they did not examine attitudes toward suicide, the authors' analysis revealed significant associations between the presence and intensity of pain and psychological distress, depression, hopelessness, and quality of life. Others found that pain was associated with depression for the most disabled people, but this relationship was not statistically significant (Bukberg, Penman, & Holland, 1984).
In a study of 44 terminally ill people, the authors found that three people were or had been suicidal and seven had desired to hasten death (Brown, Henteleff, & Rowe, 1986). All 10 individuals had been diagnosed with clinical depression. In case studies of people who believed they had cancer and committed suicide, a common factor among the individuals was a current diagnosis of depression, with no previous psychiatric history (Conwell, Caine, & Olsen, 1990). Baile and colleagues (1993) also used case studies to demonstrate the need to consider depression as a factor in requests for assistance in dying among people terminally ill with cancer.
Breitbart and colleagues (1996) found depression to be a strong predictor of support for PAS among men with HIV. Others who have studied this topic found past and present depressive symptoms to be risk factors for suicidal ideation among gay and bisexual men with AIDS (Schneider, Taylor, Kemeny, & Hammen, 1991). Rabkin and colleagues (1993) studied suicidality among longterm male survivors of AIDS and reported that 57 percent of participants indicated that they had thoughts of ending their life either before, after, or both before and after learning that they had AIDS.
The importance of social support among people with life-threatening illnesses is well documented in the literature. Rosenfeld and colleagues (1996) found that high levels of perceived social support could lessen pain, but they did not detect any significant interaction effects between pain and the quality of social support. The number of available social supports also contributed to the prediction of depressive symptoms and hopelessness. Other researchers found an association between requests for assistance in hastening death and concerns about being a burden on loved ones and not wanting to be dependent on others for personal care in dying (Back et al., 1996; Seale & Addington-Hall, 1994).
Low levels of social support are associated with other problems and concerns commonly experienced at the end of life. One study indicated that poor social support was correlated with poor quality of life in people with ALS (Ganzini et al., 1999). Poor social support was also associated with a high level of psychological distress among people with recurrent cancer (Schulz et al., 1995). An individual's perceived low level of social support was also a predictor of strong support for PAS among people with HIV (Breitbart et al., 1996) and of suicidal ideation among gay and bisexual men with AIDS (Schneider et al., 1991).
In a study of the impact of pain on people with AIDS, a significant association was revealed between pain and hopelessness (Rosenfeld et al., 1996). Among people with ALS, researchers found that those who would consider assisted suicide had higher levels of hopelessness (Ganzini, Johnson, McFarland, Tolle, & Lee, 1998). In one study of suicidal ideation among terminally ill individuals, hopelessness had a stronger association with suicidal ideation than depression (Chochinov, Wilson, Enns, & Lander, 1998). Breitbart and colleagues (1996) found hopelessness to be a strong predictor of support for PAS among HIV-infected men. Hopelessness was also a risk factor predictive of suicidal ideation among gay and bisexual men (Schneider et al., 1991). Rabkin and colleagues (1993) found that among gay men with HIV, hopelessness was associated with physical limitations and low levels of perceived emotional support. However, the mean score for participants on the hopelessness scale indicated "mild" hopelessness, and only one of 53 participants scored in the "pathological" range.
The need to examine anxiety in relationship to requests for hastening death is well documented in the literature (Massie & Holland, 1992; Cherny, Coyle, & Foley, 1994). Anxiety is believed to be a major factor to be considered when examining the clinical and psychosocial factors that influence requests for assistance in dying among terminally ill people with cancer (Baile et al., 1993). Coyle and colleagues (1990) found that at four weeks before death, 21 percent of patients with advanced cancer had anxiety. In a study of PAS in Washington State, one of the initial responses of physicians to a request for assistance in hastening death was the administration of medication to help the patient manage feelings of anxiety (Back et al., 1996). Of the cancer patients studied by Deragotis and colleagues (1983), 85 percent of those with a psychiatric condition had depression or anxiety as the main symptom.
The limited amount of research in this area precludes the drawing of definitive conclusions about people with a wide range of illnesses. In particular, little is known about people with eventually fatal chronic illnesses (for example, lung disease or cardiovascular disease), because the research on hastening death has focused on people with HIV/ AIDS, cancer, and ALS. In addition, researchers have focused primarily on people from one treatment center or agency and have predominantly studied the attitudes and experiences of men with life-threatening illnesses.
PURPOSE OF THE STUDY
The purpose of this study was to understand why some individuals with a life-threatening illness consider hastening death and others do not. The research question was as follows: What factors distinguish people facing a life-threatening illness who consider hastening death from those who do not? The phrase "life-threatening illness" was used to identify people who self-identified as having serious illness but who had not necessarily been given a specific projected life span (for example, a "terminal" prognosis) by a physician.
Recruitment of Participants
Participants were recruited in several ways. The study was advertised in several publications, including Time Lines, a national newsletter published by the Hemlock Society; two Hemlock Society state chapter newsletters; and local newspapers in a southeastern state. The Hemlock Society was chosen as a resource for participant recruitment because of the anticipated difficulty in obtaining an adequate sample of people contemplating hastening their death who were willing to discuss these issues. Advertisements for the study indicated that the criteria for participation were that the individuals have an "illness that is or could be life threatening" and be willing to be a part of a study that examined the issue of hastening death. Professional contacts throughout the country were used to obtain the names of staff at community agencies who assisted with advertising the study to the people who met the criteria.
Individuals who responded to advertisements contacted me by mail, telephone, or e-mail to obtain the survey package and informed consent form. Some respondents completed the survey and consent form at community sites and mailed the information directly to me. When I received the survey materials, I immediately separated consent forms from surveys to ensure that respondents' names could not be matched with their responses.
The dependent variable was whether or not the individual had considered hastening his or her death. The dependent variable was operationalized using the following question: Have you considered hastening your death as an option for you in the future? Respondents were asked to respond either "yes" or "no."
Standardized measurement instruments were used to measure the five independent variables:
 Pain. The West Haven-Yale Multidimensional Pain Inventory (WHYMPI) (Kerns, Turk, & Rudy, 1985) was used to measure physical pain. This 52-item measure consists of three parts with 12 subscales designed to assess the impact of pain on people's lives (pain experience), the responses of others to the individual's communication of pain, and the extent to which the individual is able to participate in daily activities. The scale has strong internal consistency with estimates of Cronbach's alpha of.70 to .90, and good construct validity (Kerns et al.). For the data analysis, the mean score for the pain severity subscale was used, because the focus was the individual's subjective physical experience with pain.
 Depression. Depression was measured using Hudson's (1982) Generalized Contentment Scale (GCS). This 25-item scale measures the degree, severity, and magnitude of depression using a seven-point category partition scale. The GCS has a coefficient alpha of .92 indicating excellent internal consistency, and it has well-established discriminant validity (Hudson). It also has good concurrent criterion validity as scores on the GCS are highly correlated with other measures of depression (Hudson).
 Social Support. The Multidimensional Scale of Perceived Social Support (MSPSS) (Zimet, Dahlem, Zimet, & Farley, 1988) was used to measure social support. The MSPSS consists of 12 items designed to measure perceived social support from three sources: family, friends, and a significant other. The scale has excellent internal consistency, with a Cronbach's alpha of .91 (Dahlem, Zimet, & Walker, 1991). The MSPSS also has good factorial validity (Dahlem et al.) and good construct validity as evidenced by a negative association with psychological distress (Kazarian & McCabe, 1991).
 Hope. Level of hope was measured using Herth Hope Index (HHI) (Herth, 1992). The HHI is 12-item measure adapted from a lengthier measure, the Herth Hope Scale, developed by the same author. The measure was tested on acute, chronic, and terminally ill adults, as well as family caregivers of terminally ill people (Farran, Herth, & Popovich, 1995). The HHI has good internal consistency, with Cronbach's alpha coefficients of .88 and .97 and test-retest reliability at two weeks of .87 and .91 (Farran et al.). Criterion validity is also excellent because the HHI correlates well with the Nowotny Hope Scale (.81) and negatively with the Beck Hopelessness Scale (-.73) (Farran et al.).
 Anxiety. Thyer's (1984) Clinical Anxiety Scale (CAS) was used to measure anxiety. The CAS is composed of 25 items that measure the amount, degree, or severity of clinical anxiety reported by the respondents. The CAS has excellent internal consistency with a coefficient alpha of .94 (Westhuis & Thyer, 1989). It also has excellent discriminant and factorial validity and is subject to little bias from background variables (Westhuis & Thyer).
Surveys from 152 individuals were returned. Four were excluded from the analysis because they did not answer the question that measured the dependent variable, resulting in a sample of 148 individuals. Forty-nine percent (n = 73) were contemplating hastening their deaths (contemplators) and 51 percent (n = 75) were not (noncontemplators). Approximately one-third of the sample (31.1 percent) identified themselves as members of the Hemlock Society. The sample was almost equally divided between male (43.4 percent) and female (56.6 percent) participants. The age range of participants was 19 to 92, with a mean age of 59.46 (SD = 17.34). The majority of participants (41.2 percent) were age 65 and older, 5.4 percent were 30 and younger, 26.3 percent were 31 to 50, and 27 percent were 51 to 64. Most participants were white (76.9 percent), followed by African American (12.2 percent), Native American (6.1 percent), Hispanic (2 percent), and Asian (less than 1 percent). A small percentage (2 percent) identified their ethnicity as "other."
Most respondents lived alone (44.6 percent) or with a spouse or partner (38.5 percent). The remainder lived with family members who were not a spouse or partner (8.1 percent), a friend or roommate (4.1 percent), a spouse or partner and other family members (3.4 percent), or other (1.4 percent).
Respondents were asked to name the main health problem that they considered life threatening. Because of the diversity of responses, I organized the responses into seven categories: cancer (18.2 percent), HIV/AIDS (17.6 percent), cardiovascular disease (16.2 percent), lung disease (8 percent), diabetes (8 percent), other (15.5 percent), and unknown (16.2 percent). The category labeled "other" included illnesses that had a frequency of one or two responses. The category labeled "unknown" included respondents who left the question about their illness blank. The high number of respondents whose illnesses were classified as "unknown" is believed to encompass several people with HIV/AIDS. My conversations with people involved in the recruitment of participants revealed that many people with HIV/AIDS were willing to participate but were afraid to mail information with their name on it that identified them as having the illness.
Respondents were also asked to identify other health problems that contributed to their condition. Nearly one-quarter (27 percent) listed no secondary illnesses. Among those who had a secondary illness, the responses were diverse and numerous with 69 illnesses identified. The most commonly listed secondary illness was cardiovascular disease (n = 24), followed by arthritis (n = 20), diabetes (n = 8), and mental health problems (n = 8).
Discriminant Function Analysis
A discriminant function analysis was conducted to understand which variables best explained the difference between the contemplators and the noncontemplators. The dependent variable (whether the person had contemplated hastening his or her death) was used as a grouping variable to place each individual in one of the two a priori defined groups. Linear combinations of the independent variables--depression, anxiety, pain, social support, and hope--were derived to discriminate between the two groups in a manner that would minimize the error rate and have a low rate of misclassification.
The overall multivariate test was statistically significant at the .05 level [Wilks's lambda = .79, [chi square] (5, N = 139) = 31.40,p = .001]. An examination of the absolute values of the discriminant function variable correlations revealed that the predictor that contributed the most to the function was depression (.753), followed by social support (.736),hope (.671), pain (.238),and anxiety (.171). The magnitude of their associations with the function were adequate to include all predictors in the function with the exception of pain and anxiety. Although the decision regarding how large a predictor must be to be considered useful to the function was subjective, the convention is that correlations should be greater than .33 (10 percent of the variance) (Tabachnick & Fidell, 1996).
The discriminant function derived from the predictors did a good job of classifying respondents correctly; 68.3 percent of respondents were classified correctly. For those who indicated that they were contemplating hastening their deaths, 61.8 percent were classified correctly. For those who indicated they had not contemplated hastening their deaths, 74.6 percent were classified correctly. To assess the accuracy of the function, I used the jackknife procedure (Lachenbruch, 1967). The jackknife procedure produced a correct classification rate of 64.7 percent, which is comparable to the original analysis. The rate of correct prediction was slightly higher for the noncontemplators (67.6 percent) compared with the contemplators (61.8 percent). Thus, these results support the reliability of the results of the initial analysis.
Wilks's lambda was used to test the significance of the differences between the two groups on each independent variable. I tested the accuracy of the predicted differences by testing the equality of the group means. The predicted differences were as follows:
1. Contemplators will have higher levels of depression than noncontemplators.
2. Contemplators will have higher levels of pain than noncontemplators.
3. Contemplators will have higher levels of anxiety than noncontemplators.
4. Contemplators will have lower levels of social support than noncontemplators.
5. Contemplators will have lower levels of hope than noncontemplators.
When I compared mean scores across groups, all differences were in the direction predicted. Contemplators were more depressed and anxious and were experiencing more pain than noncontemplators (Table 1). Contemplators also had lower levels of social support and hope. Differences in group means were statistically significant at the .05 level for all variables except pain and anxiety.
The results of this study provide support for the assertion that certain factors distinguish between those who contemplate hastening their death in the face of a life-threatening illness and those who do not. The discriminant function analysis suggests that the main factors that distinguish between these two groups are depression, social support, and hope. Although contemplators had slightly higher levels of anxiety and pain compared with contemplators, the differences were not statistically significant, and the clinical significance of these differences is questionable.
If depression plays a critical role in the decision-making process of individuals contemplating hastening their death, social workers who work with patients at the end of life must understand the factors that contribute to the depression and develop effective assessments and interventions. For those not receiving mental health treatment, the need for counseling and medications must be assessed. Because depression is a treatable illness, it is possible that, at least for some individuals, the desire to hasten death may remit with treatment. For those receiving treatment for depression, the health care professionals who provide the intervention must carefully assess whether the treatment is effective and whether other interventions are warranted. Future research must focus on the effectiveness of existing methods of treatment for depression for people with life-threatening illness who are contemplating hastening their death.
The finding that social support plays a role in distinguishing contemplators from noncontemplators may be difficult to address in practice. If those who contemplate hastening their death do not have support from family or friends, this may be difficult to remedy. However, support may be enhanced through support groups, relationships with health care professionals, or community services. Future studies may need to focus on the perspectives of friends and family members of those contemplating hastening death around issues of social support. It is not known whether respondents in this study had involved important people in their lives in their decision making around this issue.
Perhaps the most difficult factor to address in research and in the provision of direct services is hope. Because all respondents were living with a life-threatening illness, many had likely been told by their physicians that they had no hope for cure of their illness. The HHI does not distinguish what factors influence a person's level of hope. Therefore, it is unclear whether low levels of hope generally found among contemplators were the result of knowing that their illness is incurable or attributed to other factors. Researchers must examine reasons for respondents' level of hope more closely. Social workers who work with this population may need to address this issue with clients to better understand what it means to have hope in the context of a life-threatening illness and to explore ways to maintain some level of hope--even at the end of life.
With its low contribution to the discriminant function, pain severity did not appear to be an important distinguishing factor between contemplators and noncontemplators. By comparison, respondents in this study reported lower levels of pain severity, as measured by the WHYMPI, than did respondents in earlier studies of people with cancer pain (Turk et al., 1998) and chronic pain unrelated to a life-threatening illness (Linton, Hellsing, & Larsson, 1997). It is possible that this sample did not consist of people living with severe pain at the time of data collection. In light of this finding, it is important to note that the questions used to assess pain severity in the WHYMPI did not address whether the fear of severe pain in the future plays a role in a person's decision making. It is possible that although recent or current pain may not be a factor for some people, the fear of pain in the future may affect consideration of hastening death as an option for the future. This assertion is supported by data from Oregon, where 26 percent of patients who requested PAS expressed concern about worsening pain associated with their illness (Sullivan, Hedberg, & Fleming, 2000).
It is interesting to note that according to the results of the discriminant function analysis, anxiety did not appear to play a role in the decision-making process of respondents who considered hastening their death. It is possible that thinking about hastening one's death is not driven by anxiety and is not anxiety producing but is more of a rational process. It may be that consideration of hastening death as an option for the future reduces anxiety. This finding may lead some to conclude that respondents in this study simply had low levels of anxiety, which does not preclude the possibility that for those who have higher levels of anxiety, hastening death may be a more common consideration. Because the studies on anxiety cited earlier examined anxiety in the last few weeks of life, anxiety may be part of the final days of those who contemplate their death. The projected life span of respondents in this study was unknown.
Limitations of the Study
Caution must be used in generalizing the results of this study. The main limitation is the sampling technique. The nature of the population under study required the use of a purposive sample, because no known sampling frame of people with life-threatening illnesses existed. The sample did not include people with severe physical limitations and pain who were unable to complete the survey but might have answered questions differently. It must be reiterated that this was a study of contemplation of hastening death, and the findings may not reflect the factors that affect the decision-making process of those who actually hasten their deaths. Furthermore, this research did not examine whether some of the contemplators may have considered hastening their death for reasons unrelated to unrelieved symptoms or problems.
The limitations of the forms of measurement must be noted. For the assessment of psychosocial functioning in people with physical health problems, it is important to note that somatic symptoms that might be used as diagnostic indicators of depression or other disorders in physically healthy people may actually be symptoms of a physical illness and its treatment for people with life-threatening illnesses (Gotay & Stern, 1995). Thus, the content validity of the GCS and CAS may be compromised by their use with this population. The use of a single item for the measurement of the dependent variable, which was necessitated by the nature of the research question, may be a possible source of measurement error.
The results of this study can be beneficial to researchers and practitioners. Researchers can use these results to guide explanatory research that examines this issue from a longitudinal perspective. To more fully understand the decision-making process related to hastening death, it is important to assess changes in symptoms and problems over time and their effect on whether people who contemplate hastening their death actually do so. Researchers must try to obtain representative samples of this population that reflect the diversity of experiences of people at the end of life.
Social work practitioners can use the results to guide assessment and the provision of services to clients at the end of life. Assessment of patients contemplating hastening their death must focus on psychosocial issues and physical symptoms (Breitbart et al., 1996). To produce practitioners who are qualified to intervene with clients considering hastening their deaths, social work curricula and continuing education programs must address issues related to the assessment and treatment of people facing end-of-life decisions.
Continued efforts to understand the issue of hastening death are necessary before policy decisions are made. By providing multiple options, social workers may offer some clients solutions that do not involve hastening their death; other clients may still choose to hasten their death, possibly for reasons beyond the scope of this research. Given the available mental and medical treatment options, clients should not suffer mental or physical pain because of the inability of health care providers to respond effectively to their problems or concerns at the end of life. It is important that each member of the health care team receive the training necessary to respond to these issues and that team members work together to address the multiple and interrelated needs of clients. Although the factors discussed in this article may affect only some clients considering hastening their death, efforts to improve the care of dying people are important nonetheless.
Table 1. Mean Scores on Measures of Independent Variables for People with Life-Threatening Illnesses Who Contemplated or Did Not Contemplate Hastening Death Wilks's Measure (Variable) M SD Lambda F df p GCS (Depression) 28.01 16.67 .87 20.45 1 .001 Contemplators 34.12 15.81 Noncontemplators 22.15 15.40 MSPSS (Social Support) 5.29 1.45 .88 19.54 1 .001 Contemplators 4.77 1.56 Noncontemplators 5.79 1.13 HHI (Hope) 37.27 7.31 .89 16.21 1 .001 Contemplators 34.85 7.57 Noncontemplators 39.59 6.27 WHYMPI (Pain) 1.77 1.69 .99 2.04 1 .16 Contemplators 1.98 1.72 Noncontemplators 1.57 1.66 CAS (Anxiety) 19.92 13.49 .99 1.05 1 .31 Contemplators 21.12 14.10 Noncontemplators 18.78 12.92 NOTES: GCS = Generalized Contentment Scale (Hudson, 1982); MSPSS = Multidimensional Scale of Perceived Social Support (Zimet, Dahlem, Zimet, & Farley, 1988); HHI = Herth Hope Index (Herth, 1992); WHYMPI = West Haven-Yale Multidimensional Pain Inventory (Kerns, Turk, & Rudy, 1985); CAS = Clinical Anxiety Scale (Thyer, 1984).
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Quadagno for their support as dissertation committee members, and Dr. Thomas Edward Smith, dissertation committee chair, without whose assistance this project would not have been possible.
ABOUT THE AUTHOR
Elizabeth Mayfield Arnold, PhD, LCSW, is assistant professor, Department of Psychiatry and Behavioral Medicine, School of Medicine, Wake Forest University, Medical Center Boulevard, Winston-Salem, NC 27157-1087; e-mail: email@example.com. The author thanks Drs. Dianne Montgomery and Jill
Original manuscript received October 23, 2000
Final revision received April 10, 2001
Accepted October 4,200l
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|Author:||Arnold, Elizabeth Mayfield|
|Publication:||Health and Social Work|
|Date:||Feb 1, 2004|
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