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"Will I Suffer?"

National Cancer Institute, National Institutes of Health, Bethesda, MD

"The capacity to give one's attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle." Simone Weil

When patients are given the devastating news that their cancer has spread, the question, "Will I suffer?" can often be the elephant in the room. Patients may not want to ask the question because of their fear that no one will be able to answer, "No" with any level of assurance. Unfortunately, this may be true—not because of a lack of caring, but because so little is known about this age-old human experience. To prevent and relieve suffering are important goals in health care, yet complete alleviation of suffering is not always possible, and a number of explanations for this have been posited.

All research requires clear definitions of the variables under study. Despite the many definitions of suffering that have been offered,^1-4 there is no agreement that one particular definition is more accurate or comprehensive than another. Merriam-Webster:

Function: verb; Inflected Form(s): suf · fered; suf · fer · ing; Etymology: Middle English suffren, from Anglo-French suffrir, from Vulgar Latin *sufferire, from Latin sufferre, from sub- up + ferre to bear; transitive verb: 1(a): to submit to or be forced to endure less than suffer martyrdom more than (b): to feel keenly: labor under less than suffer thirst; 2: undergo, experience; 3: to put up with especially as inevitable or unavoidable; 4: to allow especially by reason of indifference; more than intransitive verb: 1: to endure death, pain, or distress; 2: to sustain loss or damage; 3: to be subject to disability or handicap.

Without this precision and comprehensiveness, accurately measuring suffering, identifying the most important correlates of suffering, predicting who is at highest risk for experiencing it, and testing interventions to relieve it will continue to elude us. Cassell⁵ suggests that these problems can be tied to "the reductive methods of science, so useful in comprehending nature, inevitably lead away from an understanding of suffering." Despite these gaps, there are some common themes among these definitions; most often listed are feelings of isolation, presence of unrelieved symptoms, and inability to completely capture the experience in everyday language.

Findings from several small studies of terminally ill cancer patients have demonstrated that the prevalence and severity of suffering tend to be high^6,7 and, as noted earlier, physical symptoms are often present. But what is so daunting about suffering is that some patients with unrelieved severe physical symptoms report minimal to no suffering, whereas patients experiencing minimal physical symptoms may report a great deal of suffering.⁸ Why this variability? Wright⁹ attributes some of this to what goes on in everyday clinical care, which she labels the "medical narrative," in which patients and their families are encouraged to tell only their medical story, which is very circumscribed, and includes the usual pieces of information: medications, dosage, past tests, and current complaints. What is not always captured is the "illness narrative," in which patients and families tell their stories of suffering and the effects of suffering on themselves, their relationships, and, ultimately, their world. Without this information, we have little understanding of the source or meaning of the patient's suffering.

In this issue of the Journal of Clinical Oncology, Wilson et al¹⁰ tackle the problem of suffering in 381 patients with advanced cancer. Using semistructured interviews, the investigators questioned patients about their physical symptoms, social concerns, psychological problems, and existential issues. Unlike the afore-cited studies, Wilson found that the vast majority (75%) reported no or mild suffering, and among the 25% who reported moderate-to-severe suffering, qualitative and quantitative analyses identified different sources of their suffering. Their findings raise a number of questions related to their sample and methodologic approaches, and implications for future research and current practice.

SAMPLE

Was this population significantly different from those in the earlier studies? The investigators point out that, indeed, their sample was biased. All patients had access to specialist palliative care services and had to be functioning well enough to engage in a detailed interview. With access to palliative care, it is very likely that many of their physical symptoms were under control and many of the psychosocial issues that emerge at the end of life were being addressed. While these are the most likely explanations, the investigators also pose the idea of the inherent resilience of this population and their ability to "withstand the physical and psychological challenges of advanced cancer..." However, this does not explain why this sample reported less suffering than those in the other studies. The impact of good palliative care can be profound, and this sample might be evidence of this. Thus, the total picture of suffering among advanced cancer patients remains incomplete. How does resilience affect patients not receiving palliative care?

DIFFERENCE IN METHODOLOGY

One of the common themes found in the definitions of suffering is the sufferer's difficulty with expressing, in everyday language, the depth of the experience. Sole reliance on self-reported surveys and questionnaires in this area of clinical research will severely limit one's understanding of the problem. Instruments, such as the M.D. Anderson Symptom Inventory¹¹ and the Edmonton Symptom Assessment Scale¹² are extremely useful in presenting an overall picture of the prevalence and severity of symptoms; but, they provide only a partial view of the total picture of suffering. Although self-report measures of suffering have been developed¹³ and used,⁸ supplementing them with interviews is necessary. The findings in this current study are a testament to this approach. Although no self-reports were used in the study, the investigators did employ three structured interview questionnaires, The Structured Interview of Symptoms and Concerns (SISC), the Primary Care Evaluation of Mental Disorders, and the Palliative Performance Scale. If participants responded affirmatively to the question on the SISC, "In an overall, general sense, do you feel that you are suffering?" open-ended follow-up questions were posed to explore in more depth the nature of the suffering. In their examination of the association between suffering and other symptoms, the investigators found the strongest correlation with suffering scores and the SISC item addressing general malaise. However, in their qualitative analysis of the open-ended questions, they found that pain was the most widely cited individual cause. As the investigators note, further investigation of these two symptoms and their associations with suffering merits further research.

FUTURE AREAS OF RESEARCH

No doubt this sample was biased in that all patients were receiving palliative care. The realities of our health care system indicate that cancer patients most in need of palliative care may not receive it. In an idealized health care system, some patients may not need this service, just as all dying patients may not need hospice care. Clearly, the 25% who reported moderate-to-severe suffering needed the unique services and expertise of palliative care, but what about the other 75%? What percentage would have reported minimal suffering if they had not received this service? We don't know how or why they were candidates for palliative care. Research is needed that will identify who is most vulnerable and in need of these specialty services.

As the investigators indicate, using relatively simple and direct questioning may go a long way toward alleviating a cancer patient's suffering. Clinicians, indeed, do miraculous things with these simple gestures.

AUTHOR'S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author indicated no potential conflicts of interest.

REFERENCES

1. Cassell EJ: The nature of suffering and the goals of medicine. N Engl J Med 306:639-645, 1982[Abstract]

2. Cherney NI, Coyle N, Foley KM: Suffering in the advanced cancer patient: A definition and taxonomy. J Palliat Care 10:57-70, 1994[Medline]

3. Rodgers BL, Cowles KV: A conceptual foundation for human suffering in nursing care and research. J Adv Nurs 25:1048-1053, 1997[CrossRef][Medline]

4. Frank AW: Can we research suffering? Qual Health Res 11:353-362, 2001[Abstract/Free Full Text]

5. Cassell EJ: The nature of suffering: Physical, psychological, social, and spiritual aspects, in Starck PL, McGovern JP (eds): The Hidden Dimension of Illness: Human Suffering. New York, NY, National League for Nursing Press, 1992

6. Kuuppelomaki M, Lauri S: Cancer patients' reported experiences of suffering. Cancer Nurs 21:364-369, 1998[CrossRef][Medline]

7. Baines BK, Norlander L: The relationship of pain and suffering in a hospice population. Am J Hosp Palliat Care 17:319-326, 2000[Abstract/Free Full Text]

8. Abraham A, Kutner JS, Beaty B: Suffering at the end of life in the setting of low physical symptom distress. J Palliat Med 9:658-665, 2006[CrossRef][Medline]

9. Wright LM: Reflections and learning about suffering, in Wright LM (ed): Spirituality, Suffering, and Illness. Philadelphia, PA, FA Davis, 2005

10. Wilson KG, Chochinov HM, McPherson CJ, et al: Suffering with advanced cancer. J Clin Oncol 25:1691-1697, 2007[Abstract/Free Full Text]

11. Cleeland CS, Mendoza TR, Wang XS, et al: Assessing symptom distress in cancer patients: The MD Anderson Symptom Inventory. Cancer 89:1634-1646, 2000[CrossRef][Medline]

12. Bruera E, Kuehn N, Miller MJ, et al: The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care 7:6-9, 1991[Medline]

13. Buchi S, Buddeberg C, Klaghofer Ret al: Preliminary validation of PRISM (Pictorial Representation of Illness and Self Measure): A brief method to assess suffering. Psychother Psychosom 71:333-341, 2002[CrossRef][Medline]

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This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by O'Mara, A. M. Search for Related Content PubMed PubMed Citation Articles by O'Mara, A. M. Social Bookmarking                            What's this?