"Shoot. Shoulda taken my Altoids," Joe would say whenever I asked about his smoking. "Look," he'd protest, "I don't have cancer, I'm not in chemotherapy and I'm certainly not sittin' here talking to you." Of course, Joe Sullivan would have been the first to say he was full of it. "Yeah, I'm in denial. Who wouldn't be?"
Forty-nine years old when he first came to see me, Joe was still robust and healthy looking, with an air of confidence and dignity that was never to waver. We must have made an odd-looking pair on those occasions when we stood side-by-side in the clinic's waiting room; at well over six feet, he towered over my almost-five-foot frame, and probably weighed close to three times what I did. Whether standing or sitting, Joe always moved with a perfectly erect spine, and his movements had a controlled gracefulness despite his large frame. A proud man of Irish extraction, he had a pale complexion and a thick head of beautiful black hair, which was always perfectly coifed. I wondered how he'd cope when he started finding clumps of it on his pillow, in his comb, in his hands over the coming weeks.
There once was a time when Joe's doctor would have "protected" him from knowing his prognosis, or even his diagnosis. Fortunately, the patronizing deceptions that were once commonplace are no longer tolerated. But the age of informed consent brings with it new problems, as patients sometimes complain bitterly of aloof doctors and the cold-hearted statistics they have to offer. People like Joe depend on their own mental gymnastics for protection instead, making it hard for medical teams and families to be supportive and honest at the same time.
Where does hope end and denial start? More important, does it matter? The answer is complicated. I could have begun this discussion with any of the following statements:
Denial helps cancer patients cope better.
Denial is a function of giving up, and gets in the way of coping and survival.
Denial will help cancer patients live longer.
Denial has no effect on survival at all.
Denial is a necessary element of a fighting spirit and is essential for the battle
ahead.
And every single one of those statements can be supported by citations from the research literature. One reason the research is so inconsistent is that there has been little consensus on what we actually mean by denial, and, therefore, no agreement on how best to measure it. Sometimes, it's treated as a conscious choice (like Joe's confession that he's in denial), while others view it as an unconscious mechanism necessarily outside the patient's awareness, something noted by friends, family or doctor (or, in Elizabeth Edwards's case, an infinite line of journalists opining on how she really was dying, no matter how she and her husband chose to describe her situation).
I personally was conflicted about how to view denial. Having grown up in a chaotic environment where reality was a fluid concept, I was particularly loathe to respect coping techniques that were seemingly based on pretense. Besides, it seemed to refer to a game people played, allowing themselves to abdicate responsibility for a multitude of sins without having to stop committing them. For example, in one study, almost half of cigarette smokers believed smoking caused cancer only in people who smoked more cigarettes daily than they did. Psychologists, in particular, tend to prefer truth to illusion, regardless of our theoretical orientations. We try to help people gain better control over their destinies by seeing the truth of their actions in some way - whether by uncovering unconscious motivations for their behavior (psychoanalysis) or recognizing the ways in which their actions are elicited by cues in their environment (behavior therapy), or by understanding how their irrational thought processes affect their moods (cognitive-behavioral therapy).
But my first day treating medically ill patients in health psychology a few years before, I was hit wit a completely different approach. Suddenly, our supervisors taught us a new mantra, Denial is your best friend, as long as it doesn't interfere with treatment. Some researchers described it as if it were a medical treatment itself, a titration mechanism for meting out reality in manageable doses. "Tell all the truth," Emily Dickinson once wrote, "but tell it slant." And Joe made it clear early on that he wanted things as slanted as possible. I had to admit, I couldn't blame him.
Here is a partial list of what Joe had to look forward to at the time of our first session:
Vomiting.
Diarrhea.
Nausea lasting for a week after each infusion, every three to four weeks.
Anemia from decreased red blood cell counts.
Infection due to low white blood counts.
Total hair loss.
Numbness and tingling in hands and feet, which might be irreversible.
Ringing in the ears.
Loss of appetite.
Metallic taste.
Irritation of the veins through which the chemo is given.
Tissue damage if the chemotherapy agent escapes from the vein.
Reversible kidney and liver toxicities.
Some of these issues he'd definitely face, and some were only potential side effects, leading to uncertainty about his quality of life or how to best prepare for it. And all of it for a treatment that was itself uncertain, or, really, not likely to succeed. Between the time he learned about his treatment and the time he would start it, which would afford him a better quality of life - wondering about vomiting, numbness, ringing, hair loss, etc., in exchange for a less than 10% chance to live five years? Or taking a trip to California to visit family and pretend he'd be fine?
Guess which he chose, with his doctor's blessing.
Joe's oncologist Dr. Shapiro had asked me to evaluate him in the hospital soon after he began his final chemotherapy. His mood and appetite were uncharacteristically low, and he reluctantly agreed to a psychological consultation after his regular checkup. When I walked into the spare white examining room, I found Joe squeezed into a small beige metal chair, eyeing me warily. Distant but cooperative, he made a point of answering questions, but said very little otherwise. He dutifully offered up his background, Jersey boy, married high school sweetheart, one daughter. And two beautiful granddaughters, Charlotte, six, and Isabel, four. He smiled as he reached for his wallet to show me their pictures. I smiled back, and thought of my elderly father showing off pictures of my two year old son, Max. For a moment, I wondered how much longer either grandfather would have with his grandchildren.
I asked how it felt to be talking to me. There was a long pause.
"Nothing personal, but how long have you been doing this?" He crossed his arms across his chest, hiding his hands in his armpits, but leaving his thumbs out pointing up. Joe asked about my credentials, and I explained that I held a doctorate in Clinical Psychology and was a Fellow in the Psychiatry Department. It was a sensible question, though one I was rarely asked.
"You know, you look awfully young..." He seemed to linger on the word "young." Perhaps it's because of my size that I can seem significantly younger than I am. Though there have been times when I've welcomed this illusion, it's not particularly reassuring to patients who'd prefer therapists with an aura of wisdom and experience. The deeper implication was also clear: what did I know about cancer when I was young and healthy and couldn't possibly know what his life was like?
"Of course, it's true that I am younger than you," I said, "though I'm actually older than I look." I thought I sounded a bit defensive, and I wisecracked, "On the other hand, it's not as if you're going to turn around and find out I really have sixty years worth of experience behind me." Joe laughed, and uncrossed his arms. I had the sense he was going to give the short young Psychologist a try.
