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Journal of Clinical Oncology, Vol 25, No 13 (May 1), 2007: pp. 1691-1697 © 2007 American Society of Clinical Oncology. DOI: 10.1200/JCO.2006.08.6801 Suffering With Advanced Cancer
From The Rehabilitation Centre, The Ottawa Hospital; Élisabeth Bruyère Research Institute, SCO Health Service; School of Psychology; Department of Medicine, University of Ottawa, Ottawa, ON; Department of Psychiatry, University of Manitoba, Winnipeg, MB; Department of Family Medicine, University of Saskatchewan, Saskatoon, SK; Faculty of Pharmacy, Université Laval, Québec, QC; Grey Nuns Community Hospital; Department of Oncology, University of Alberta, Edmonton, AB; British Columbia Cancer Agency–Cancer Centre for the Southern Interior, Kelowna; Department of Family and Community Medicine, University of British Columbia, Vancouver, BC; and Dr H Bliss Murphy Cancer Centre, St John's, NL, Canada Address reprint requests to Keith G. Wilson, PhD, The Rehabilitation Centre, The Ottawa Hospital, 505 Smyth Rd, Ottawa, ON, Canada K1H 8M2; e-mail: kewilson{at}ottawahospital.on.ca
Purpose: The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates. Patients and Methods: Semistructured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, "In an overall, general sense, do you feel that you are suffering?"
Results: Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho [ Conclusion: Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.
It has been stated that "the alleviation of suffering is crucial in all of medicine, especially in the care of the dying." 1 Conceptually, suffering is held to be a state of severe distress2-6 that is subjective and unique to the individual,5-7 arising from the perception of threat to one's integrity as a biologic, social, or psychological being.2,4,8,9 Despite suffering's central importance in end-of-life care, however, little formal research has been conducted into the causes and correlates of suffering as a general construct. Indeed, some authors have cautioned that the study of specific causes of global suffering may be reductionistic, because suffering ultimately emerges as an experience of the whole person that can arise from innumerable individual problems.9,10 Others have suggested that suffering occurs at a depth of experience that cannot be expressed in spoken language, which may make it inherently inaccessible to scientific inquiry.11 Nevertheless, a small body of empirical research has attempted to describe the nature and sources of suffering among the terminally ill. Qualitative investigations have discovered the importance of changes in one's psychological life and social world10,12 and the apprehension and deprivations that can arise in response to a life-threatening illness.13 Among the specific categories of suffering are difficulties in physical, social, psychological, and existential dimensions.3,14 In some studies of patients with cancer, there has been a particularly strong association with physical symptoms,14-16 whereas in others this association has been less robust.10,17 Although there is a long tradition of referring to "pain and suffering" as if they were synonyms, it is also evident that there can be pain without suffering, and suffering without physical pain.4,9,15 Importantly, not all patients with terminal illness report that they are suffering, although the few available surveys suggest that the majority do.14-18 Cassell1 has noted that "making a diagnosis of suffering means first of all maintaining a high index of suspicion in the presence of serious disease and obviously distressing symptoms. As a start, it means asking whether the patient is suffering and why. Even though patients often do not know that they are suffering, they must be questioned directly: ‘Are you suffering?’" In the present study, we have adopted this approach to examine the experience of suffering among people receiving palliative care for cancer.
Participants This project was conducted as part of the Canadian National Palliative Care Survey (NPCS), a multicenter study of quality of life among patients receiving palliative cancer care. The recruitment characteristics of the NPCS have been described in detail previously.19,20 Briefly, we screened consecutive patients at eight sites across Canada. The patients either had received consultations with palliative care specialists or had been admitted to palliative care units. The inclusion criteria were that the patient was cognitively and physically well enough to undergo a valid interview in either English or French; informed that he or she was being treated for an incurable malignancy; expected to live less than 6 months; and not in an acute state of crisis. A total of 921 patients were approached about participation. Of this group, 401 declined, 115 died or deteriorated medically before the interview could be administered, and 24 began the interview but did not complete it. Thus, the final study group comprised 381 participants. The NPCS protocol was approved by the research ethics boards of all institutions from which participants were recruited. All participants signed a written acknowledgment of informed consent.
Study Protocol The interview began with a review of demographic, family, and religious characteristics. The main body of the protocol comprised a 22-item version of the Structured Interview of Symptoms and Concerns (SISC).21 The SISC is a clinician-administered interview that uses a format of single-item screening to assess a range of common physical symptoms, social concerns, existential issues, and mental health problems. Procedurally, each SISC item begins with a structured lead question into the presence and severity of each particular problem or concern, followed by semistructured probing to clarify the degree of distress associated with it. The interviewer then rates the severity of each problem on a 7-point scale (0 = no problem to 6 = extreme). Specific instructions are included for each scale point to standardize those ratings across interviewers. A rating of 3 is described as "moderate" in severity, and represents the threshold at which the respondent reports that the particular symptom or concern is "a significant problem." In previous research into other topics, we have used this threshold to differentiate those who acknowledge important problems in particular areas from those who do not.22-24 The SISC inquiry into psychological symptoms was supplemented by items from the clinician evaluation guide of the Primary Care Evaluation of Mental Disorders (PRIME-MD).25 These items required yes/no responses to questions about the remaining symptoms of specific anxiety and depressive disorders, which permitted the application of diagnostic criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV).26 As shown in Table 1, the assessment of suffering was performed with a SISC item that asked, "In an overall, general sense, do you feel that you are suffering?" If the participant responded affirmatively, a series of follow-up questions was used to determine the frequency, intensity, and distress associated with that suffering. This was followed by an open-ended discussion of the nature of the participant's suffering, guided by semistructured prompts such as, "If you tried to explain to someone what your suffering was like, what would you say? Please try to describe it;" and "When I ask you about suffering, what is the main thing that is causing you to suffer?"
At the conclusion of the interview, the interviewer rated the participant's functional status as ranging from 0 (death) to 100 (unimpaired), using the Palliative Performance Scale (PPS).27
Data Analyses The transcripts of the participants' responses to the open-ended questions were subjected to a content analysis, aided by NVivo qualitative analysis software (QSR International, Doncaster, Victoria, Australia). First, each transcript was coded independently by two raters, who identified discrete statements in which the respondents reflected on the causes of their suffering. Reliability between raters was 66.0% for these initial codings; disagreements were resolved by a third rater. This resulted in a pool of statements that were reviewed by a multidisciplinary team of investigators who then met as a group to sort the responses into more global dimensions of suffering.
Quantitative Analyses Table 1 shows the distribution of suffering scores. Approximately half of the participants (49.3%) did not actually characterize their experience as suffering at all, and another quarter (24.9%) reported only minimal or mild degrees of suffering. However, there were 98 individuals (25.7%) who indicated that their suffering was a significant problem, including 30 (7.9%) who were suffering severely or extremely. As shown in Table 2, participants with low or high levels of suffering did not differ with respect to sex, marital status, or religious denomination. However, those who reported higher levels of suffering were younger and more highly educated than were participants with lower levels of suffering. Clinically, they had lower PPS scores than did participants with low suffering. However, they had comparable median survival durations, so they were not necessarily closer to death at the time they were interviewed. There was no difference in the prevalence of suffering between palliative care unit inpatients and patients recruited from other settings.
With respect to mental health, more than half (53.1%) of the participants with higher levels of suffering met diagnostic criteria for a depressive or anxiety disorder, compared with only 14.5% of those with lower levels of suffering. The problems endorsed on the SISC are shown in Table 3. Participants with higher levels of suffering had more problems overall that were scored at the moderate-to-extreme level. In fact, this group had a significantly higher prevalence of distress on every individual symptom and concern addressed by the SISC, with the exception of financial difficulty.
The highest correlation with suffering scores was found for the SISC item addressing general malaise, the overall feeling of being sick or unwell (  = 0.56). This was followed by correlations with the physical symptoms of weakness ( = 0.42) and pain ( = 0.40), and the psychological problems of depression ( = 0.39) and anxiety ( = 0.35). Given the historical association between pain and suffering, Figure 1 illustrates how the prevalence of moderate-to-extreme suffering rises with the level of pain. Of the 113 participants who reported no pain, 13 (11.5%) met this threshold of suffering; of the 20 participants with severe-to-extreme pain, 14 (70.0%) indicated that they were suffering significantly.
Considered as total subscale scores, the physical, social, psychological, and existential dimensions were all correlated significantly with one another, at levels ranging from = 0.30 to 0.55 (P < .001; Table 4). The entry of these scores into the ordinal logistic regression analysis yielded a significant model overall ( 2 = 194.75; P < .001; Nagelkerke's pseudo R2 = 0.43). There were reliable independent contributions from physical symptoms (Wald's test = 63.34; P < .001), psychological problems (Wald's test = 29.63; P < .001), and existential issues (Wald's test = 8.58; P = .003), but not social concerns (Wald's test = 0.01; P > .10).
Qualitative Analyses Because of concerns about fatigue for some patients, the open-ended questions were administered to only 182 of the 195 participants who reported at least a minimal level of suffering. These respondents provided a total of 372 narrative responses that clarified the causes of their suffering. As shown in Table 5, these responses conformed well to a four-category classification comprising physical problems, psychological distress, social-relational worries, and existential issues. Problems in the physical dimension were reported most frequently as sources of suffering, and accounted for approximately half (49.5%) of the statements. Pain was the most widely cited individual cause, and was mentioned by 69 (37.9%) respondents. Social-relational worries, existential concerns, and psychological issues comprised 18.8%, 17.7%, and 14.0% of the narrative statements, respectively.
Previous studies of patients with terminal illness have found that the global experience of suffering is a ubiquitous one, in the sense that only a small minority—8% to 36% of participants—reported no suffering.14-18 The severity of suffering has been less clear, however. For example, Ganzini et al18 found that only 20% of patients with amyotrophic lateral sclerosis scored a 4 or higher on a 6-point scale of suffering. Other investigators, on the other hand, have reported rates of moderate-to-extreme suffering that have ranged from 63%16 of patients to more than 80%.14,15 In this context, therefore, one of our most striking findings is that almost half of the participants did not characterize their experience as "suffering" at all. Of those who did, 25.7% suffered at the moderate-to-extreme level, which is toward the lower end of prevalence rates available in the literature. This raises the question as to why we did not find a higher proportion of seriously suffering patients. Several factors may have contributed to this result. First, the inclusion criteria for the NPCS focused on the recruitment of terminally ill individuals who were well enough to engage in a detailed interview that required insightful self-disclosure. Patients were not approached if they were confused, medically unable to participate, or in a state of crisis. As reported elsewhere,19 only a minority of all patients treated by the palliative care services fulfilled these criteria and were asked to participate. Moreover, of those who were approached, there was a relatively high rate of refusal. Therefore, we acknowledge the possibility of an ascertainment bias that may have selectively favored the recruitment of patients with lower levels of suffering. Second, all of the participants had access to specialist palliative care services. A central goal of palliative care is to alleviate the suffering of the terminally ill, so if the clinical services were successful in this mission, then the causes of suffering may have already been addressed for some individuals by the time they were interviewed. Third, as has been suggested by Cassel,1 it is perhaps possible that some participants were not aware that they were suffering, or chose not to interpret their experience within that particular frame of reference. Demographically, those with the highest levels of suffering were more highly educated, which may suggest a greater tendency to extrapolate from concrete, individual problems to a more generalized abstraction of global suffering. They were also younger, and may have felt a more acute sense of untimely death. The younger patients may also have had more distress associated with physical symptoms. For example, other research has found that younger patients with advanced cancer have greater difficulty in achieving stable pain control.28,29 Even with these provisos, it remains clear from the present results that many patients with advanced cancer do not consider themselves to be suffering. In this sense, the findings are comparable to recent research in the area of loss of dignity. For example, Chochinov et al23 found that although minor concerns about loss of dignity were reported by 46% of a cohort of terminally ill patients with cancer, only 7.5% indicated that it was a significant source of distress. Chochinov et al concluded that people are inherently resilient, and most are able to withstand the physical and psychological challenges of advanced cancer while keeping their dignity intact. We would add to this conclusion that it is also possible to withstand these challenges without succumbing to a pervasive sense of suffering. Unfortunately, however, it is also clear that many patients do suffer, and some suffer severely. Our findings offer a perspective on the nature of that suffering. In keeping with some other research in the area of cancer care,14-16 we found that, although suffering had a multidimensional character, there was a dominant physical component for many participants. This was evident in the fact that (1) the strongest individual correlation was with the physical symptom of general malaise; (2) the physical symptom subscale had the greatest predictive value in the ordinal regression analyses; and (3) approximately half of the qualitative responses referred to sources of physical suffering. Curiously, in the qualitative analysis, pain stood out as the symptom mentioned most frequently as a source of suffering, whereas it was not the most highly correlated symptom in the quantitative analysis. The relative importance of pain versus malaise in the experience of suffering is an area that merits future research. It may be that pain is a significant cause of suffering when it occurs, but one that is usually amenable to prompt treatment. An ongoing sense of sickness, on the other hand, may be more difficult to alleviate and become an increasingly important source of suffering over time. The other half of the qualitative statements referred to issues that were broadly psychosocial, and reflected psychological, existential, and social-relational concerns. In the regression analyses, the psychological symptoms and existential issues made independent contributions to the prediction of suffering scores, whereas the social-relational items did not. This probably has to do with multicollinearity among the psychosocial dimensions. That is, although participants often described social concerns as a source of suffering, the distress associated with these issues may have overlapped significantly with that of the psychological problems and existential concerns; hence, these items made no additional unique contribution in the regression model. One further aspect of the psychological component of suffering is also noteworthy. We found that more than half of the participants with moderate-to-extreme suffering fulfilled DSM-IV criteria for a depressive or anxiety disorder, compared with fewer than 15% of participants with lower levels of suffering. The cross-sectional nature of the NPCS design does not permit us to determine whether these disorders arise as a consequence of suffering, or whether they are in fact a primary cause. Indeed, in the absence of longitudinal data, we are unable to comment on the manner in which suffering itself may change over the course of illness. However, the association of suffering with the presence of psychological disorders does provide additional information about a major emergent theme from this study—that suffering, when it occurs, is a multidimensional experience of distress. Clinically, the present results have two main implications. First, it is evident that inquiring into the patient's sense of suffering, even using relatively simple and direct questioning, can yield a wealth of information about the individual's overall well-being. The resulting information may be nonspecific with respect to the particular causes of suffering, but it can serve as an important entry point for understanding the global experience of the whole person. Second, the fact that not all patients are suffering is a relevant point for patient counseling. This can be a reassuring fact for the many people with cancer who are worried that advancing disease will inevitably cause them to suffer. This is not necessarily the case, at least when there is access to adequate palliative care.
The authors indicated no potential conflicts of interest.
Conception and design: Keith G. Wilson, Harvey Max Chochinov, Srini Chary, Pierre R. Gagnon, Karen Macmillan, Marina De Luca, Fiona O'Shea, David Kuhl, Robin L. Fainsinger Financial support: Keith G. Wilson, Harvey Max Chochinov, Pierre Allard, Srini Chary, Pierre R. Gagnon, Karen Macmillan, Marina De Luca, Fiona O'Shea, David Kuhl, Robin L. Fainsinger Administrative support: Keith G. Wilson, Harvey Max Chochinov, Katerine LeMay, Pierre Allard, Srini Chary, Pierre R. Gagnon, Karen Macmillan, Marina De Luca, Fiona O'Shea, David Kuhl, Robin L. Fainsinger Provision of study materials or patients: Harvey Max Chochinov, Pierre Allard, Srini Chary, Pierre R. Gagnon, Karen Macmillan, Marina De Luca, Fiona O'Shea, David Kuhl, Robin L. Fainsinger Collection and assembly of data: Keith G. Wilson, Christine J. McPherson, Katerine LeMay Data analysis and interpretation: Keith G. Wilson, Harvey Max Chochinov, Christine J. McPherson, Katerine LeMay, Pierre Allard Manuscript writing: Keith G. Wilson Final approval of manuscript: Harvey Max Chochinov, Christine J. McPherson, Katerine LeMay, Pierre Allard, Srini Chary, Pierre R. Gagnon, Karen Macmillan, Marina De Luca, Fiona O'Shea, David Kuhl, Robin L. Fainsinger
Supported by a grant from the Canadian Institutes of Health Research (CIHR), and by a CIHR Institute of Aging New Emerging Team grant, "Optimizing End-of-Life-Care for Seniors." H.M.C. is a Tier 1 Canada Research Chair of the CIHR. P.R.G. is a Research Scientist of the National Cancer Institute of Canada with funds from the Canadian Cancer Society. Presented in part at the 16th International Congress on Care of the Terminally Ill, September 27, 2006, Montreal, QC, Canada. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. Cassell EJ: Diagnosing suffering: A perspective. Ann Intern Med 131:531-534, 1999 2. Cassell EJ: The nature of suffering and the goals of medicine. N Engl J Med 306:639-645, 1982[Abstract] 3. Cherny NI, Coyle N, Foley KM: Suffering in the advanced cancer patient: A definition and taxonomy. J Palliat Care 10:57-70, 1994[Medline] 4. Chapman CR, Gavrin I: Suffering and its relation to pain. J Palliat Care 9:5-13, 1993[Medline] 5. Rodgers BL, Cowles KV: A conceptual foundation for human suffering in nursing care and research. J Adv Nurs 25:1048-1053, 1997[CrossRef][Medline] 6. Byock IR: The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med 12:237-252, 1996[Medline] 7. Stark PL, McGovern JP: The meaning of suffering, in Stark PL, McGovern JP (eds): The Hidden Dimension of Illness: Human Suffering. New York, NY, National League for Nursing Press, 1992, pp 25-42 8. Chapman CR, Gavrin I: Suffering: The contributions of persistent pain. Lancet 353:2233-2237, 1999[CrossRef][Medline] 9. Kahn DL, Steeves RH: The experience of suffering: Conceptual clarification and theoretical definition. J Adv Nurs 11:623-631, 1986[Medline] 10. Arman M, Rehnsfeldt A, Lindholm L, et al: The face of suffering among women with breast cancer. Cancer Nurs 25:96-103, 2002[CrossRef][Medline] 11. Frank AW: Can we research suffering? Qual Health Res 11:353-362, 2001 12. Williams BR: Dying young, dying poor: A sociological examination of existential suffering among low socioeconomic status patients. J Palliat Med 7:27-37, 2004[CrossRef][Medline] 13. Daneault S, Lussier V, Mongeau S, et al: The nature of suffering and its relief in the terminally ill. J Palliat Care 20:7-11, 2004[Medline] 14. Kuuppelomäki M, Lauri S: Cancer patients' reported experiences of suffering. Cancer Nurs 21:364-369, 1998[CrossRef][Medline] 15. Baines BK, Norlander L: The relationship of pain and suffering in a hospice population. Am J Hosp Palliat Care 17:319-326, 2000 16. Benedict S: The suffering associated with lung cancer. Cancer Nurs 12:34-40, 1989[Medline] 17. Hickman SE, Tilden VP, Tolle SW: Family perceptions of worry, symptoms, and suffering in the dying. J Palliat Care 20:20-27, 2004[Medline] 18. Ganzini L, Johnston WS, Hoffman WF: Correlates of suffering in amyotrophic lateral sclerosis. Neurology 52:1434-1440, 1999 19. Wilson KG, Chochinov HM, McPherson CJ, et al: Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol (in press) 20. Wilson KG, Chochinov HM, Skirko, M, et al: Depression and anxiety disorders in palliative cancer care. J Pain Symptom Manage 33:118-129, 2007 21. Wilson KG, Graham ID, Viola RA, et al: Structured interview assessment of symptoms and concerns in palliative care. Can J Psychiatry 49:350-358, 2004[Medline] 22. Chochinov HM, Wilson KG, Enns M, et al: Desire for death in the terminally ill. Am J Psychiatry 152:1185-1191, 1995 23. Chochinov HM, Hack T, Hassard T, et al: Dignity in the terminally ill: A cross-sectional cohort study. Lancet 360:2026-2030, 2002[CrossRef][Medline] 24. Wilson KG, Curran D, McPherson CJ: A burden to others: A common source of distress for the terminally ill. Cogn Behav Ther 34:115-123, 2005[Medline] 25. Spitzer RL, Williams JBW, Kroenke K, et al: Utility of a new procedure for diagnosing mental disorders in primary care: The PRIME-MD 1000 study. JAMA 272:1749-1756, 1994[Abstract] 26. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (ed 4). Washington, DC, American Psychiatric Association, 1994 27. Anderson F, Downing GM, Hill J: Palliative Performance Scale (PPS): A new tool. J Palliat Care 12:5-11, 1996[Medline] 28. Fainsinger RL, Nekolaichuk CL, Lawlor PG, et al: A multicenter study of the revised Edmonton Staging System for classifying cancer pain in advanced cancer patients. J Pain Symptom Manage 29:224-237, 2005[CrossRef][Medline] 29. Nekolaichuk CL, Fainsinger RL, Lawlor PG: A validation study of a pain classification system for advanced cancer patients using content experts: The Edmonton classification system for cancer pain. Palliat Med 19:466-476, 2005 Submitted August 11, 2006; accepted November 15, 2006. This article has been cited by other articles:
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Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
3) were compared with those who reported no suffering, or only minimal or mild levels. Demographic and clinical characteristics were analyzed using 
