When patients deny illness

Much denial-blogging today. Alisha’s mother-in-law won’t accept physical limitations imposed by her cancer. Orac tries to help a patient who rejects her malignant biopsy results. What is denial, and how should we approach it? (Pause for a quick check – has the Cheerful Oncologist posted about this yet? No? I’d love to know what he thinks!) Here’s Dr. Simon Wein, MD, of Memorial Sloan-Kettering Cancer Center:

“Evaluating Denial in Patients with Life-Threatening Illnesses”

“The idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity–activity designed largely to avoid the fatality of death . . . by denying in some way that it is the final destiny for man.” -Ernest Becker, 1973

…Most seriously ill patients express denial at some point in their illness. Defense mechanisms are automatic, usually unconscious, processes that protect the individual from anxiety. In themselves, defense mechanisms are neither good nor bad.

…Dimsdale and Hackett proposed as a definition of denial, “the common goal of a variety of defenses, conscious or unconscious . . . a repudiation of all or a portion of the total available meaning of an illness in order to allay anxiety and to minimize distress.” In this meaning, denial, like an umbrella, includes many defenses, such as distortion, forgetfulness, rationalization, humor, suppression, and so on. Implied in their definition is the belief that denial is not always bad or maladaptive.

…The most important features of denial are its fluidity and wide variation in clinical presentation. Denial can come and go as needed to protect the psyche. In a sense, it acts as a barometer of stress… The influence of cultural attitudes on denial is a difficult but important issue. Surveys[8] clearly demonstrate that there is widespread variation between countries and cultures in the willingness of physicians and families to give medical information to the patient. When people immigrate, this diversity of views can lead to conflicts, which typically center on tension between autonomy and paternalism.

Sometimes we note, tragically, that while the patient and family each are attempting to protect the other by pretended or imposed denial, in reality both parties are desperate to talk with each other. Such denial obstructs both communication and completion of life’s tasks. The patient and family are denied a full sharing of their last moments together. The isolation can induce premature bereavement and can result in a more difficult grieving process for the surviving family members.

Those who favor paternalism argue that the truth will upset the patient unnecessarily, may cause despair and depression, and may even shorten the patient’s life. There is some evidence to suggest that certain groups of patients who use denial or a “fighting spirit” to deal with their cancer are more likely to be free of disease and to have longer lives.[9] One patient whom I treated described her attitude to a life-threatening disease by saying, “Every day I’m up, I’m spitting in death’s eyes.” Is this “fighting spirit” of hers actually a form of denial?

In contrast, those who favor autonomy emphasize that patients should have the right to control their own destinies. Moreover, they believe that by making their own decisions and facing the hardships, patients can experience spiritual and psychological growth.

Is Denial Adaptive or Maladaptive?

We might then ask, is denial good or bad, adaptive or maladaptive? If it is adaptive, denial should reduce stress and anxiety and should improve functioning for the patient. It should alleviate depression without compromising medical care. Even if the ideals of self-awareness and spiritual growth are not achieved, denial should help the individual survive psychologically at that moment…

For denial to be judged as bad for the patient, it must contribute to maladaptive behaviors, such as anxiety, mania, depression, or inappropriate refusal of medical treatment.

Dr Wein recommends Orac’s approach:

…to try to discover the cause of the patient’s anxiety that is provoking the denial. For example, it may be fear of dying the way an old aunt did, fear of pain, or guilt. After several sessions of discussing these issues, the anxiety usually will be expressed…

Such therapies can be difficult to achieve as patients approach the end of life. However, some patients who remain in denial until the last days of life seem to suddenly “let go” and accept reality.