Pathways to distress: The multiple determinants of depression, hopelessness, and the desire for hastened death in metastatic cancer patients
Introduction
The diagnosis and progression of cancer can be a traumatic event in the lives of those affected and may trigger fears of suffering, disability, helplessness, and isolation (Gurevich, Devins, & Rodin, 2002). Distress may arise in a substantial minority of those with advanced disease in the form of depression and hopelessness (Breitbart et al., 2000, Jones et al., 2003), and, in a smaller number, with the loss of the will to live or a desire for hastened death (Breitbart et al., 2000, Ganzini et al., 2002, Lavery et al., 2001). The latter may occur in those with inadequate relief of pain or other physical symptoms, depression, hopelessness, social isolation, or a reluctance to depend on others (Breitbart et al., 2000, Ganzini et al., 2002, Lavery et al., 2001).
Converging evidence has identified multiple factors that affect adaptation to trauma and burden, including that associated with advanced cancer. These include social support and self-esteem (Schroevers, Ranchor, & Sanderman, 2003), internal “working models” of self in relation to others (see Mikulincer & Shaver, 2007, for an extensive review), the capacity to find meaning (i.e., spiritual well-being) (Balboni et al., 2007), socioeconomic status (Lorant et al., 2007), and disease-related factors, including stage of disease and physical distress (Jones et al., 2003). These domains are all relevant to modern approaches to health care, including palliative care (WHO, 2007), that address the totality of a patient's relational existence (Sulmasy, 2002).
We have applied a biopsychosocial model (Sulmasy, 2002) to understand the multiple determinants of psychological distress in patients with metastatic cancer. This model is based on the assumption that constructs such as depression, hopelessness, and the desire for hastened death, represent final common pathways of distress in patients with cancer and in other medically ill populations (Jones et al., 2003, Peveler et al., 2002). From this perspective, multiple, interacting physical, psychological, and social variables contribute to the likelihood of these outcomes over the course of progressive disease (Borrell-Carrió et al., 2004, Suls and Rothman, 2004). We have previously demonstrated the relationship of some of these antecedents to depression, hopelessness, and the desire for hastened death (Jones et al., 2003). Other studies based on attachment theory (Bowlby, 1980, Bowlby, 1982) have also shown the role of individual characteristics, such as self-esteem and attachment security, in protecting from the traumatic effects of loss and mortality salience (e.g., Taubman Ben-Ari, Florian, & Mikulincer, 1999).
We present here findings about the unique contribution of specific psychosocial and disease-related variables to the prediction of depression, hopelessness, and the desire for hastened death among terminally ill cancer patients. Using cross-sectional data from patients with metastatic gastrointestinal and lung cancer, we have tested a theoretical model (see Fig. 1) in which depression and hopelessness are the most proximal determinants of the desire for hastened death, mediating the effects of physical distress and multiple risk and protective factors on this outcome. The components of the model are discussed briefly below.
Depression refers to an emotional disturbance marked by the cardinal symptoms of persistent and pervasive low mood and the loss of interest or pleasure in normal activities (Peveler et al., 2002). Individuals with cancer and other serious medical conditions are at increased risk for persistent depressive symptoms (Nordin et al., 2001, van't Spijker et al., 1997). In that regard, major depression has been reported in 14% of cancer patients (Berard, Boermeester, & Viljoen, 1998), 16% of palliative care patients (Breitbart et al., 2000), and up to 29% of patients attending a Pain Therapy and Palliative Care Clinic (Ciaramella & Poli, 2001). These elevated rates, 2–4 times that found in the general population (Rodin & Voshart, 1986), are likely due to the multiple stressors and losses to which individuals with advanced disease are subjected and to the meaning attributed to those experiences (Rodin, Craven, & Littlefield, 1991).
Hopelessness is a psychological construct defined as a “system of cognitive schemas whose common denominator is negative expectations about the future” (Beck, Weissman, Lester, & Trexler, 1974, p. 864). Although initially considered to be a core feature of depression (Beck, Rush, Shaw, & Emery, 1979), it has since been shown to be independently related to suicidality (Beck, Steer, Beck, & Newman, 1993), the desire for hastened death (Breitbart et al., 2000, Chochinov et al., 1998, Chochinov et al., 1995), and the willingness to consider assisted suicide (Ganzini, Johnston, McFarland, Tolle, & Lee, 1998). Some research suggests that hopelessness is an even stronger predictor of suicidality than is depression (Beck, Brown, Berchick, Stewart, & Steer, 2006).
The desire for hastened death refers to the extent to which a more rapid death than would occur naturally is desired (Breitbart et al., 2000). Assessment of the desire for hastened death may have broader application in evaluating the desire for death in the seriously ill or dying than the direct assessment of suicidality, since the former is likely to have a lower threshold and to be less hampered by social and legal constraints (Breitbart et al., 2000). The desire for hastened death has been shown to be associated with physical distress, depression, hopelessness, low social support, and impaired spiritual well-being in patients with metastatic cancer (Rodin, Zimmermann et al., 2007) but has been found to be more common in palliative care settings (Breitbart et al., 2000, McClain et al., 2003, Rosenfeld et al., 2000). Hopelessness and, to a lesser extent, depression, have been found to mediate the effect of illness-related factors, such as pain and number of physical symptoms, on the desire for hastened death (Jones et al., 2003).
Controversy persists regarding the relation between depression, hopelessness, and the desire for hastened death. It has been suggested that hopelessness may lead to depression (Johnson et al., 2001), may be a subtype of depression (Joiner et al., 2001), or, together with depression and suicidality, may constitute a single syndrome (Shahar, Bareket, Rudd, & Joiner, 2006). Consistent with the findings of Shahar et al. (2006), we have postulated that depression and hopelessness are mutually reinforcing and, based on earlier findings (Jones et al., 2003), that depression and hopelessness may both mediate the impact of risk factors on the desire for hastened death.
In his exposition of attachment theory, Bowlby, 1980, Bowlby, 1982 explained that the availability of caring, supportive relationship partners, beginning in infancy, is an important determinant of attachment security (confidence that one is competent and deserving of love, and that caregivers will be available and supportive when needed). In turn, attachment security fosters the development of stable self-esteem, constructive coping strategies, maintenance of emotional stability, and the formation of mutually satisfying relationships throughout life. Mikulincer and Shaver (2007) have extensively shown that individuals with strong attachment security believe that they can rely on the support of others, whereas those with a relative lack of attachment security either worry about being abandoned by others (anxious attachment style) or believe that they must rely upon themselves and not depend upon others (avoidant attachment style). Several studies have also demonstrated that securely attached individuals are less likely to suffer from depression and hopelessness (e.g., Bifulco et al., 2002, Ciechanowski et al., 2003, Shorey et al., 2003, Wei et al., 2003). Moreover, attachment security seems to promote a sense of symbolic immortality (Florian & Mikulincer, 1998), thereby protecting individuals from the terrifying awareness of their finitude (Mikulincer, Florian, & Tolmacz, 1990). We have recently shown that attachment security protects from depression among patients with cancer, an effect partly mediated through the association of attachment security with greater social support (Rodin, Walsh et al., 2007).
The multiple losses and bodily alterations resulting from advanced disease inevitably represent challenges to identity and to the sense of self. Low self-esteem has been associated with greater risk of depression (Brown and Moran, 1997, Roberts et al., 1996), poorer recovery from depression (Sherrington, Hawton, Fagg, Andrew, & Smith, 2001), poorer adjustment in medical populations (Penninx et al., 1997), and the desire for death in individuals with HIV disease (Lavery et al., 2001). The preservation of self-worth may be a fundamental challenge facing individuals with advanced disease, and an important predictor of well-being in this context.
Spirituality has been defined as the way in which people understand and live their lives in view of their ultimate meaning and value (Muldoon & King, 1995). It is a subjective experience that occurs both within and outside of traditional religious systems (Vaughan, Wittine, & Walsh, 1996). Spiritual concerns are typically awakened at the end of life, and the lack of meaning at that time may have an important bearing on the will to live (Lo et al., 2002). Although predictive of religiousness and spirituality (Peterman, Fitchett, Brady, Hernandez, & Cella, 2002), spiritual well-being is considered primarily an individual state or outcome, rather than a set of beliefs about divinity, humanity, or ultimate truth (Gomez & Fisher, 2003). Lack of spiritual well-being has been associated with depression in cancer patients and the terminally ill (Nelson, Rosenfeld, Breitbart, & Galietta, 2002), and with lower tolerance of physical symptoms (Brady, Peterman, Fitchett, Mo, & Cella, 1999). In the terminally ill, spiritual well-being can act as a buffer against depression, hopelessness, and the desire for hastened death (Breitbart, 2002). Overall, the evidence suggests that spiritual well-being is an important protective factor against psychological distress in patients with advanced and terminal disease.
There is evidence that the physical burden of disease contributes to symptoms of depression, hopelessness, and the desire for hastened death (Breitbart et al., 2000, Jones et al., 2003, Rosenfeld et al., 2000). In that regard, cancer pain has been consistently associated with psychological distress, most notably depression (Kelsen et al., 1995, Spiegel et al., 1994), but also hopelessness (Sela, Bruera, Conner-Spady, Cumming, & Walker, 2002). Indeed, intense uncontrolled pain is one of the most feared consequences of cancer (Levin, Cleeland, & Dar, 1985), and one of the most frequent reasons for seeking a hastened death through euthanasia (Breitbart, 1987, Breitbart, 1990).
Fig. 1 presents a heuristic model of the hypothesized relationships between physical burden, attachment security, self-esteem, spiritual well-being, depression, hopelessness, and the desire for hastened death. We used structural equation modeling to apply this model to a cross-sectional dataset of patients with metastatic gastrointestinal or lung cancer. We have previously reported on the relationship between attachment security and depression (Rodin, Walsh, et al., 2007; see also Rodin, Zimmermann et al., 2007, for detailed sample characteristics). The unique contribution of the present paper is in presenting a comprehensive test of all relationships articulated in our model.
Section snippets
Measures
Cognitive functioning was assessed using the Short Orientation–Memory–Concentration Test (SOMC; Katzman et al., 1983). Individuals scoring under 20 were identified as being cognitively impaired and ineligible for the study.
Self-esteem was assessed using the 10-item Rosenberg Self-Esteem Scale (RSES; Rosenberg, 1989). Scores may range from 10 to 40 with higher scores representing greater self-esteem.
Attachment security was assessed using the 36-item Experiences in Close Relationships scale (ECR;
Sample characteristics and descriptive statistics
A total of 406 participants with Stage IV (metastatic) gastrointestinal or Stage IIIA, IIIB, or IV (recurrent or metastatic) lung cancer were recruited from the ambulatory outpatient clinics at Princess Margaret Hospital. Table 1 presents descriptive statistics and internal reliabilities for relevant measures. We examined the skewness coefficients of our variables and found that desire for hastened death had a moderate positive skew. However, given the adequate sample size in the current study
Discussion
The data support a theoretical model in which depression and hopelessness are the most proximal determinants of the desire for hastened death, mediating the effects of illness-related and individual factors on the desire for hastened death. Disease burden was the strongest predictor of depression, with psychosocial and demographic characteristics operating as either protective or risk factors. Individuals with lower self-esteem and more anxious attachment style were at greater risk for
Acknowledgments
We thank our study staff, students, volunteers, and Princess Margaret Hospital colleagues for their valuable contributions to this study, and especially our study participants who so kindly gave their time and effort to help us better understand the experience of living with cancer. This study was supported by the Canadian Institutes of Health Research (CIHR #62861 and #74684, G. Rodin), York University (L. Gagliese), and the Edith Kirchmann Fellowship in Psychosocial Oncology and Palliative
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