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Departments of Psychiatry (H.M.C.), Family Medicine (H.M.C.), and Community Health Sciences (H.M.C., T.H.), and Faculty of Nursing (T.F.H., S.M.), University of Manitoba, Winnipeg, Manitoba, Canada; Manitoba Palliative Care Research Unit (H.M.C., S.M.) and Patient and Family Support Services (H.M.C., T.F.H.), CancerCare Manitoba, Winnipeg, Manitoba, Canada; Edith Cowan University (H.M.C., L.J.K.), Perth, Western Australia, Australia; and St. Boniface General Hospital (M.H.), Winnipeg, Manitoba, Canada
Departments of Psychiatry (H.M.C.), Family Medicine (H.M.C.), and Community Health Sciences (H.M.C., T.H.), and Faculty of Nursing (T.F.H., S.M.), University of Manitoba, Winnipeg, Manitoba, Canada; Manitoba Palliative Care Research Unit (H.M.C., S.M.) and Patient and Family Support Services (H.M.C., T.F.H.), CancerCare Manitoba, Winnipeg, Manitoba, Canada; Edith Cowan University (H.M.C., L.J.K.), Perth, Western Australia, Australia; and St. Boniface General Hospital (M.H.), Winnipeg, Manitoba, Canada
Departments of Psychiatry (H.M.C.), Family Medicine (H.M.C.), and Community Health Sciences (H.M.C., T.H.), and Faculty of Nursing (T.F.H., S.M.), University of Manitoba, Winnipeg, Manitoba, Canada; Manitoba Palliative Care Research Unit (H.M.C., S.M.) and Patient and Family Support Services (H.M.C., T.F.H.), CancerCare Manitoba, Winnipeg, Manitoba, Canada; Edith Cowan University (H.M.C., L.J.K.), Perth, Western Australia, Australia; and St. Boniface General Hospital (M.H.), Winnipeg, Manitoba, Canada
Departments of Psychiatry (H.M.C.), Family Medicine (H.M.C.), and Community Health Sciences (H.M.C., T.H.), and Faculty of Nursing (T.F.H., S.M.), University of Manitoba, Winnipeg, Manitoba, Canada; Manitoba Palliative Care Research Unit (H.M.C., S.M.) and Patient and Family Support Services (H.M.C., T.F.H.), CancerCare Manitoba, Winnipeg, Manitoba, Canada; Edith Cowan University (H.M.C., L.J.K.), Perth, Western Australia, Australia; and St. Boniface General Hospital (M.H.), Winnipeg, Manitoba, Canada
Departments of Psychiatry (H.M.C.), Family Medicine (H.M.C.), and Community Health Sciences (H.M.C., T.H.), and Faculty of Nursing (T.F.H., S.M.), University of Manitoba, Winnipeg, Manitoba, Canada; Manitoba Palliative Care Research Unit (H.M.C., S.M.) and Patient and Family Support Services (H.M.C., T.F.H.), CancerCare Manitoba, Winnipeg, Manitoba, Canada; Edith Cowan University (H.M.C., L.J.K.), Perth, Western Australia, Australia; and St. Boniface General Hospital (M.H.), Winnipeg, Manitoba, Canada
Departments of Psychiatry (H.M.C.), Family Medicine (H.M.C.), and Community Health Sciences (H.M.C., T.H.), and Faculty of Nursing (T.F.H., S.M.), University of Manitoba, Winnipeg, Manitoba, Canada; Manitoba Palliative Care Research Unit (H.M.C., S.M.) and Patient and Family Support Services (H.M.C., T.F.H.), CancerCare Manitoba, Winnipeg, Manitoba, Canada; Edith Cowan University (H.M.C., L.J.K.), Perth, Western Australia, Australia; and St. Boniface General Hospital (M.H.), Winnipeg, Manitoba, Canada
The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.
What influence does personality have on the way people experience and cope with a terminal illness? One would assume that personality characteristics would provide a template for how people experience the many challenges facing them as they move toward death. That being the case, it might also be assumed that understanding personality in the context of end-of-life care would help clinicians identify people at risk for poorer adjustment and overall outcomes. While characteristics such as personality are thought to be relatively immutable, identifying traits that render some people especially vulnerable could help care providers target earlier tailored approaches, subsumed within the realm of comprehensive, quality end-of-life care.
Yet very little research has been done in this area, with the literature examining personality and end-of-life experience, for the most part, silent. By and large, what we do know about personality and the way patients experience end-of-life distress can be inferred from various studies that tangentially broach this topic. For instance, one Japanese study used projective psychological testing—the Rorschach test—to examine personality changes in patients as they aged. They reported that, over a 10-year period, elderly individuals showed a reduction in productive and creative thinking, cooperativeness, and concerns for and interest in society. Those nearer death were found to be less affectively complex, less introspective, less assertive, less aggressive, and more docile and dependent. However, interest in and sensitivity to others was maintained until the end.
While these findings say something about how aging and nearing death affect personality, they say nothing directly about how these changes influence coping with various end-of-life challenges.
Within the cancer literature, the personality trait pessimism has been shown to predict poorer adjustment among patients with early stage breast malignancies.
This influence held across a variety of issues, including overall sense of well-being, satisfaction with sexual functioning, and thought intrusion relating to the diagnosis. While this provides a good example of how personality might influence various other aspects of adjustment in the context of early stage disease, it does not provide prospective data addressing how these traits affect coping with various later terminal challenges.
Within the setting of end-stage disease, Cohen et al. suggest that patients contemplating death-hastening measures have personalities marked by independence, perfectionism, and narcissistic traits.
Ganzini et al. reported the perceptions of 35 Oregonian physicians who had received a patient request for a lethal prescription under the Death with Dignity Act.
These physicians described patient personalities as strong and vivid, characterized by determination, inflexibility, and a wish to control the timing and manner of their death and to avoid dependence on others.
While these studies stress the connection between various attributes and seeking out death-hastening measures, they say little about how personality characteristics might influence (i.e., modulate, mediate, or even insulate from) the experience of various common end-of-life symptoms and concerns.
In spite of this paucity of literature addressing personality and coping toward the end of life, there are conceptual models that can inform our understanding of this intriguing relationship. For example, the general model of diathesis-stress interaction as it applies to the occurrence of depression offers an important and interesting theoretical perspective.
According to this model, exposure to stress and subsequent depression will be mediated by way of a preexisting diathesis (Fig. 1). In essence, this diathesis or susceptibility—be it genetic, biological, cognitive, or social—modulates the influence of stress and its particular consequences. The effects of stress are dependent on diathetic loading; people with low diathetic loading are less likely to manifest poor outcomes in response to stress compared to people with higher diathetic loading.
Fig. 1General model of diathesis-stress interaction. (Adapted from Monroe and Simons
Enns and Cox refer to a similar “predisposition or vulnerability model,” in which personality factors—particularity neuroticism—appear to be predictive of later depression. Neuroticism refers to a broad, general personality trait, at the core of which is a temperamental sensitivity to negative stimuli.
This raises the question of whether the general model of diathesis-stress interaction—with neuroticism being a marker of susceptibility—may shed light on the nature of personality, distress, and coping toward the end of life.
The direct study of personality and end of life has been hampered by the absence of feasible, reliable psychometric tools. The Neuroticism Extraversion Openess (NEO) Personality Inventory is an instrument that derives from extensive factor analytic research on the structure of personality. It consists of five domains of normal adult personality, including neuroticism, extraversion, openness to experience, agreeableness, and conscientiousness.
In its entirety, it consists of 240 items, thus limiting its application to highly vulnerable, dying patients. Among the five dimensions assessed by the NEO Personality Inventory-Revised, neuroticism is an obvious candidate to consider as a predictor of end-of-life adjustment. The measure of neuroticism used in this study consisted of a brief (12-item) questionnaire, derived from the NEO-Five Factor Inventory (NEO-FFI).
Bearing in mind our theoretical framework, we measured diathetic loading on neuroticism, and examined how this interacted with the stress of terminal illness across a range of physical, psychological, social, and existential aspects of end-of-life experiences.
Methods
Participants
Between January 2001 and January 2004, 409 patients with end-stage cancer from the Winnipeg Regional Health Authority Palliative Care Program were approached to participate in this study. This program includes two specialized palliative care inpatient units, located at St. Boniface General Hospital and the Riverview Health Center, and provides coordinated community-based palliative and end-of-life care services. Eligibility criteria for the study included the following: being aged 18 years or older; having a diagnosis of terminal cancer with a life expectancy of less than 6 months; an ability to read and speak English; demonstrating no evidence of dementia or delirium that might make completion of the study protocol difficult; and the ability to provide informed consent. Patients were not to be referred to the study if they were cognitively impaired, unable to give informed consent, or too gravely ill to take part in the protocol. The medical status of every patient was reviewed by the treatment staff, who independently ascertained their eligibility for the study on the basis of clinical consensus.
The Faculty of Medicine Ethics Committee, University of Manitoba, approved the study, and the Hospital Research Review Board of each hospital granted formal access to patients. Prior to data collection, all patients provided written informed consent.
Procedures
Patients were approached in person and asked to complete a battery of self-report measures, providing a thorough assessment of their emotional state. Diathetic loading on neuroticism was measured using the NEO-FFI neuroticism items.
These items had the patient rate if he or she perceived himself or herself to be someone who is a worrier; often feels inferior to others; sometimes feels like he or she goes to pieces under stress; rarely feels lonely or blue; often feels jittery; sometimes feels completely worthless; rarely feels fearful or anxious; often feels angry at the way people treat him or her; too often feels discouraged and likes giving up when things go wrong; seldom feels sad or depressed; often feels helpless and wants others to solve his or her problems; and at times feels so ashamed that he or she wants to hide. In order to measure the possible interaction between neuroticism and the stress of living with a terminal illness, various measures of end-of-life distress were measured. These included several 10 cm visual analog scales (VAS) measuring burden to others, anxiety, hopelessness, and will to live (with higher scores indicating a greater sense of anxiety, hopelessness, depression, and will to live). VAS measures have been used extensively in palliative care research, largely because they are easily and quickly administered to patients,
Items from the Structured Interview Assessment of Symptoms and Concerns in palliative care were used to evaluate sense of dignity, desire for death, and depression.
Each of these items is rated from “0” (the complete absence of distress) to “5” (extreme distress). A brief measure of quality of life was obtained, using the Quality-of-Life Scale. This two-item scale rates the patient's self-assessed quality of life and his or her satisfaction with the current quality of life (ranging from “1” [poor] to “10” [excellent]).
The Symptom Distress Scale, a 13-item scale designed for use with cancer patients, measured the degree of distress associated with the following symptoms: nausea, appetite, insomnia, pain, fatigue, bowel pattern, concentration, appearance, breathing, coughing, and outlook (degree of feeling worried or frightened about things).
Respondents reported their symptoms on a five-point scale, with high scores reflecting more distress. Pain was further evaluated using The McGill Pain Questionnaire.
VAS were used to measure two conceptual dimensions of social support: the structural aspects of support network (i.e., the availability of social support) and satisfaction with the degree of support provided.
Using this approach, patients' perceptions of support from their family members, friends, and health care providers were measured.
As is appropriate in all palliative care research, the length and complexity of the protocol was based on a balance between thoroughness and sensitivity to the issue of patient burden. Experienced palliative care research nurses administered the study questionnaires and collected basic demographic information from all participants. The application of the protocol was regularly monitored by the principal investigator (HMC), in order to ensure data integrity and the standardized administration of all study measures.
Statistical Analysis
Correlation coefficients were calculated between neuroticism and various measures of end-of-life symptoms and concerns. We also conducted a series of forward stepwise multiple regression analyses to examine whether neuroticism continued to demonstrate an influence on various presentations of end-of-life distress after controlling for other variables entering into these models. Unless otherwise specified, all tests were done on a two-tailed basis. In order to safeguard against Type I error, only P-values less than 0.01 were judged significant.
Results
Of the 409 patients identified as potential participants for the study, 10 died and the health of 39 deteriorated before data collection could take place; 27 felt too sick or were too confused to allow for their participation; and 3 had communication problems (either were unable to speak or did not speak English). Of the remaining 330 patients meeting eligibility criteria, 211 (64%) agreed to participate in the study (123 inpatients, 88 outpatients). Median length of survival from the time of study entry to death was 52 days.
The mean age of participants was 67 years (SD=13.5). One hundred twenty-two (57%) were women. Forty percent of the study group had less than a high-school education, 20% had graduated from high school, and 40% had some college or postgraduate training. Fifty-seven percent of patients were married or cohabiting, with the remainder being divorced (7%), never married (8%), widowed (25%), or separated (2%). Religious affiliation was Protestant 46%, Catholic 26%, Jewish 2%, other 15%, and no religious affiliation 11%. Primary tumor sites included lung (26%), gastrointestinal tract (24%), genitourinary system (11%), and breast (13%). A further 7% of individuals had hematological cancers, and the remaining 19% had various solid tumors.
By way of testing the general model of diathesis-stress interaction, Pearson correlations were calculated between neuroticism and common sources of distress—or outcomes—that frequently arise toward the end of life. The univariate analysis showed significant correlations, ranging from small to large (r=0.184–0.541), between neuroticism and various forms of distress (Table 1). The strongest significant correlations were detected between neuroticism and the psychological variables, ranging between r=0.436 (anxiety) and r=0.541 (level of depression) (P<0.0001). Existential issue correlations were somewhat smaller, but nevertheless significant, ranging between r=−0.211 (will to live) and r=0.448 (level of hopelessness) (P<0.003–0.0001). The interaction between the diathesis, neuroticism, and social issues appeared more moderate, with significant correlations ranging between r=0.207 (satisfaction with health care support) and r=−0.328 (satisfaction with friend support) (P<0.004–0.0001). Several social issues—friend support availability, satisfaction with family support, family support availability, and health care support availability—failed to reach significant correlations with neuroticism. Interactions between physical variables and neuroticism appeared least robust, with significant correlations nevertheless ranging between r=0.184 (perceived pain rating) and r=0.299 (level of fatigue) (P<0.009–0.0001); several physical variables—frequency of pain, severity of nausea, total dependency score, bladder pattern, level of appetite, and cough frequency—failed to reach significance. There were several variables that were difficult to classify exclusively within one domain. These general classification variables—ability to sleep at night (r=0.216), level of concentration (r=0.386), and quality of life (r=−0.466)—each correlated significantly with neuroticism (P<0.002–0.0001).
Table 1Correlations Between Neuroticism and End-of-Life Symptoms and Concerns
While neuroticism is thought to reflect a premorbid personality characteristic, the possibility that current levels of distress—across all variable domains—might have influenced neuroticism scores needed to be explored. Research has shown that, to some extent, neuroticism may be state dependent;
Therefore, a series of forward stepwise multiple regression analyses were conducted to determine if neuroticism continued to demonstrate an influence on various individual end-of-life distress measures after controlling for all other protocol distress variables entering into these models (Table 2). In order to control for the potential impact of age and gender, these variables were forced into the regression model, prior to stepwise selection from the end-of-life distress measures. Despite this, neuroticism continued to be a significant predictor variable within regression models examining the following symptoms and concerns:
•
Description of mood (neuroticism β=0.323; first to enter model; R2=0.324, F=29.9, P<0.0001)
•
Current level of depression (neuroticism β=0.202; first to enter model; R2=0.553, F=29.0, P<0.0001)
•
Current level of hopelessness (neuroticism β=0.202; fourth to enter model; R2=0.395, F=20.7, P<0.0001)
•
Current level of anxiety (neuroticism β=0.219; second to enter model; R2=0.310, F=39.8, P<0.0001)
•
Fearful or worried (neuroticism β=0.204; first to enter model; R2=0.374, F=22.6, P<0.0001)
•
Loss of dignity (neuroticism β=0.180; first to enter model; R2=0.338, F=19.5, P<0.0001)
•
Level of concentration (neuroticism β=0.299; first to enter model; R2=0.255, F=13.37, P<0.0001)
•
Current quality-of-life rating (neuroticism β=0.300; first to enter model; R2=0.256, F=16.6, P<0.0001)
•
Satisfaction with quality of life (neuroticism β=−0.236; first to enter model; R2=0.393, F=20.5, P<0.0001)
The entry of neuroticism into these models (the first to enter each, with the exception of the “hopelessness” and “anxiety” models) suggests that it may be an important determinant of end-of-life experience, even after controlling for concurrent levels of distress. The details of each variable model are summarized in Table 2 and begin to outline the influence of personality, or more specifically neuroticism, on the experience of coping with challenges that arise in the context of terminal illness.
Discussion
While the past is often hailed as the best predictor of the future, there is little empirical evidence to say how this applies to the way people experience and cope with various symptoms and concerns that mount as death approaches. And while it is easier to imagine a relationship between “who we are” and “how we die” than not, the palliative care literature has, until now, had little to say about this intriguing, possible connection. This study is the first to examine how personality—specifically the personality trait, neuroticism—creates a diathesis or vulnerability, influencing how dying patients cope toward the end of life.
The data are consistent with our theoretical framework; indeed, neuroticism appears to render terminally ill patients susceptible to poorer outcomes—outcomes that can arise in the face of various stressors and challenges associated with moving toward death. Based on the magnitude of these correlational data, it would appear that the association between neuroticism, and psychological and existential distress is stronger than socially and physically mediated concerns. This is consistent with a probable connection between antecedent personality characteristics and how people cope with various end-of-life challenges.
To interpret these data, it is critical to bear in mind that dying patients face a multitude of challenges and losses. Some studies have reported instances where personality inventories partially reflect current life circumstances,
in addition to the trait-like disposition they purport to measure. Therefore, we performed several multiple regression analyses to examine the extent to which concurrent distress might inflate the seeming connection between neuroticism and various end-of-life issues. After allowing variables to enter stepwise into these models, nine symptoms and concerns—including both measures of depression, anxiety; sense of dignity; quality-of-life rating, satisfaction with quality-of-life rating; level of hopelessness, level of concentration and outlook—continued to have neuroticism enter as a significant predictor variable (P<0.01–0.0001). To further articulate these findings, it is worth examining an illustrative model in some detail. Within the “dignity” regression model, for example, neuroticism remained a significant predictor of current sense of dignity, even after controlling for satisfaction with health care support, outlook, perceived pain, frequency of nausea, and total dependency rating. Thus, while perception of dignity is influenced by factors across various domains (which we have previously described under the categories of illness-related concerns, the social dignity inventory, and the dignity conserving repertoire),
it is also, in part, shaped by a diathesis or vulnerability—neuroticism—which in principle is a trait that would have predated the terminal condition.
Like many other studies that have attempted to examine the influence of long-standing character traits on current phenomena, a major limitation of this study is the lack of prospective, longitudinal personality data. Such an approach would ensure that personality evaluation is untainted by the potentially distorting effects of concurrent stressors or distress.
In other words, finding a way of assessing personality characteristics before the onset of a life-limiting illness, and then examining its relationship to various end-of-life experiences, would provide the strongest evidence for an association between a dying patient's personality characteristics and how he or she copes with end-of-life symptoms and concerns.
This study focused exclusively on patients with end-stage cancer; clearly, the influence of personality and coping with respect to other terminal conditions bears critical examination. Another limitation of this study is its narrow focus on one domain of personality, that being neuroticism. This was done for both theoretical and practical reasons, including neuroticism's known association with distress and the brevity of the 12-item measure of neuroticism (which was easily completed by highly vulnerable patients), respectively. Nevertheless, future inquiry of this kind would benefit by study designs that include a broader spectrum of personality characteristics, including the full five-factor personality model (neuroticism, extraversion, openness to experience, agreeableness, and conscientiousness). This may be achieved within the context of palliative care either by enrolling patients earlier in their course, while they are well enough to complete lengthier protocols, or by having proxy informants (i.e., family members) complete lengthier personality inventories on their dying loved ones' behalf.
Another possible limitation—while not so much specific to this study, but rather to the topic it addresses—pertains to a research agenda focusing on personality and end-of-life care. Personality, after all, refers to intransigent qualities and traits that shape the way people view, experience, and respond to their world. If these characteristics are nonmalleable or largely unchangeable, it begs the question as to why researchers should pay them any heed, or clinicians even bother taking them into account. Invoking the general model of diatheses-stress interactions, as it applies to physical medicine, offers an insightful analogy. For example, hormone receptor status has been associated with a preferential response to certain chemotherapeutic agents among women with breast cancer;
women whose vulnerability diathesis consists of being BRCA1 positive are at higher risk for breast and ovarian cancer and may benefit by vigilant monitoring and prophylactic intervention;
In each instance, a static trait or vulnerability foretold of a preferential response to a designated therapeutic course of action. Segueing to end-of-life care, might personality traits provide the static context in which differential therapeutic outcomes are possible? Is personality, in fact, a filter through which end-of-life distress is mediated, thus influencing the subjective experience and coping responses, based on “who the patient is” rather than merely the symptoms and concerns they are exposed to. Such a relationship would enhance the ability to predict which patients—based on certain innate, personal characteristics—might respond best to specific palliative interventions. Explicating the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic strategies, approaches, and responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.
References
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Supported by a grant from the National Institute of Canada, with funding from the Canadian Cancer Society. Dr. Chochinov is a Canada Research Chair in Palliative Care, funded by the Canadian Institutes of Health Research. Dr. Kristjanson is supported by a Chair in Palliative Care, funded by The Cancer Council of Western Australia. Dr. Hack is a Dorothy J. Lamont Scientist, supported by the National Cancer Institute of Canada and the Canadian Institutes of Health Research.
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