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Patients Who Deny Terminal Illness May Suffer Higher Depression Levels
Terminally ill persons who deny their state are often depressed, a new investigation has found. The denial may represent an attempt to shield themselves from the profound psychological distress that they feel over dying.
By Joan Arehart-Treichel
What happens when a person is told that he has a terminal illness and doesn’t have much longer to live? To a large degree, it is uncharted psychological territory. But some Canadian researchers now have at least some tentative answers based on a study that they conducted and reported in the November/December Psychosomatics.
Harvey Chochinov, M.D., Ph.D., a professor of psychiatry and family medicine at the University of Manitoba in Winnipeg, and his coworkers used a semistructured interview to rate 200 patients who were in advanced stages of cancer. They were questioned about the level of their awareness of their medical prognosis. The patients were asked questions such as, "How serious do you believe things are?" and "Do you have a sense of how much time might be left to you?" The investigators also gave the patients a semistructured interview for depressive disorders, using the depression items of the Schedule for Affective Disorders and Schizophrenia (SADS).
Some 90 percent of the patients—181—appeared to acknowledge their grim situation, either fully or at least to some degree, the researchers found. The remaining 10 percent or so—19 patients—did not, however. These 10 percent in turn were some three times more likely to be depressed than those who recognized their prognosis.
"We are assuming in this study that we are dealing with patients who are manifesting a rigid degree of denial," Chochinov explained in an interview. "That is, that there is the assumption that all of these patients have been the recipients of copious amounts of information, that all have been treated within a Western culture, and certainly the ethos of Western medicine is for full and complete disclosure. On the other hand, the 10 percent we are identifying seem to be patients who, despite receiving information, are not able to give voice to their dire medical circumstances. So while it is cross-sectional data, and we cannot really talk about cause and effect, it could be that one form that their psychological distress is taking is the stance of rigid denial."
If this is indeed the case, what does it mean to psychiatrists and others who care for the terminally ill? "I think what it says to us as health care providers," Chochinov said, "is that if we come across a patient taking this rigid position on denial, then we need to be more vigilant to the fact that what appears to be blissful ignorance may be psychological distress." In other words, these patients may need help from a psychiatrist, family doctor, or other member of the team caring for them.
Susan Block, M.D., a psychiatrist and chief of adult psychosocial oncology at the Dana Farber Cancer Institute in Boston, holds a similar view. "Dr. Chochinov’s important study highlights the need for psychiatrists to be at the bedside with their colleagues in palliative care and other disciplines in assessing and managing the complex psychological needs of dying patients. His finding that depression frequently underlies, or is associated with, denial suggests that there is a role for psychiatrists both in educating our colleagues in other disciplines about assessment and treatment of depression and psychological responses such as denial, as well as in evaluating and treating these patients ourselves."
As much as terminal patients in denial may need help with depression, however, it does not necessarily mean they are without hope. The reason is that Chochinov and his team assessed their subjects for hopelessness using the "pessimism" item from the Beck Depression Inventory and the "Discouragement/Pessimism/Hopelessness" item from the SADS and found that terminal patients in denial were no more or less likely to be hopeless than nondenying terminal patients.
In fact, this particular finding—that hope seems to be a factor independent of denying or accepting dying—raises a profound question: How do people who remain hopeful while still acknowledging dying manage to do it? "Now that, I think, is the intriguing issue," Chochinov said.
"Clearly for our patients who have full insight, hope seems to be based on something other than just prognostic expectation," he speculated. "So I think it opens up the whole area of exploring the various dimensions of hope, and, in exploring them, what we are likely to find is that hope is based on the ability to find meaning, to find purpose in one’s life, even if one is dying."