The Clock on the Wall: On Dying, Denying, and the Search for Hope
The Reality Dance When Coping With Terminal Illness
Posted Oct 29, 2011
"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
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:
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.
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.
"I've been sad all my life," he said almost in a whisper. He suddenly sounded tired as he described the first great trauma of his life, the death of his seven year old sister when he was five. She had contracted rheumatic heart disease, most likely due to a previously undiagnosed streptococcus infection. Joe and his parents were at her bedside when she died. The second trauma was his experience years later in the Vietnam War, where he had been involved in a very bloody offensive -- "the time to be there," he added in a low, gravelly voice while cocking his head and raising an eyebrow. With a subtle smile, he pantomimed riding his jeep down mine-laden roads, dodging bullets, explosions and fires, pretending to look around as if dodging them even now. If it weren't for the fact that his enthusiasm seemed so tightly controlled, he would have seemed rather like a character out of a John Wayne movie. At times, he had a defiant look in his eyes. "Do you understand now what I'm capable of surviving?" they seemed to say.
I thought about my first terminally ill patient, a beautiful frail young woman hospitalized with AIDS a few years earlier, before protease inhibitors made it a more manageable disease. She was twenty-nine, the same age as I at the time, although, unlike me, she was unlikely ever to see her thirtieth birthday. I particularly remembered her voice; it had a very sweet and musical tone, even when she would describe her recurrent nightmare of being buried before she was quite dead. I noticed that her doctors began standing further away from her bed than they used to, visiting less frequently or staying for shorter periods. She described many family members' doing the same.
"No," she would scream from her dream coffin, "I'M NOT DEAD YET!" She kept putting off writing her will or preparing her two children, but her denial helped her feel alive when the people around her had started giving her up for dead.
Joe had just started his last chance chemotherapy. He knew the odds were low that it would keep him alive very long; at least, he'd been informed of it. I wanted to get a sense of Joe's true level of hopefulness. But it was hard to know what that meant under the circumstances.
"How did you take the news?" I asked.
"I believe Dr. Shapiro's gonna give me five more years. Maybe even ten. I don't care what the books say. How I feel? Hopeful, that's how." He glared, and I didn't ask about the other alternative outcomes. Not yet anyway. We started with his story.
After Joe returned from the war, he worked his way up to a middle management position in a large New York City bank, despite having been a college dropout. He was to work at his last position for fifteen years until he learned he had stage II Non-Small Cell Lung Cancer, with some local spread but no distant metastasis. Surgical resection of the tumor meant the loss of parts of his lung, and radiation soon followed. It took less than a year for the cancer to recur and spread, and he quickly progressed to stage IV, the most advanced stage.
I spoke with the medical team about what to expect from Joe's current treatment regimen. A number of them mentioned that he had failed his previous chemotherapy protocol. It was a commonly used bit of self-protective jargon; it was their protocol that had done the failing. Joe's current and final treatment was a new platinum-based chemotherapy combination that was his last chance at anything beyond palliative care. In addition, he was taking an anti-emetic for vomiting, and a mild narcotic for his increasing bone pain.
Joe felt generally prepared to do battle, although he was now at a particularly stressful point in his treatment. Dogged increasingly by insomnia and agitation, he wasn't getting along well with his family, especially his daughter Maureen. Though Joe was afraid she might even cut him off from his grandchildren, he gave few details. He implied that they had never gotten along particularly well, especially since her divorce two years earlier. But his relationship with the girls had never been affected before. Joe choked back tears when he mentioned them. It is our families who are our greatest emotional resource in dealing with tragedy. The fear of losing them can be greater even than the fear of dying.
He was not suicidal. At least not yet, Joe told me. But when the time came, he would decide for himself how far he was willing to go. For now, that point was the intense breathlessness known as air hunger that often accompanies late-stage lung cancer. He had a lot of company. In one study, cancer patients were offered a hypothetical choice - fifteen year survival but with various symptoms versus fewer years but with fewer symptoms. They had to decide how much time they were willing to sacrifice in order to be free of any given symptom. At the very top of the list was air hunger; subjects were willing to give up ten years, a full two thirds of their allotted time, in order to escape it. I wondered how Joe would fare when the situation was no longer hypothetical for him.
We agreed to meet for weekly psychotherapy sessions, and I also referred him for a psychiatric medication evaluation. Soon, Joe added two new drugs to his already prodigious regimen. We left our goal vague - help in coping with his grueling new chemo.
Though I wouldn't say that Joe explicitly lied at our initial meetings, he clearly tended to gloss over uncomfortable issues, particularly when it came to Maureen. He said that they argued often, but was stingy with the details. He strongly implied that the fault was hers, and if I asked too many questions, he would cut me off, "Look. Let's just say we don't see eye-to eye." He also seemed tightly coiled, as if he might explode if pushed too far, though he never actually did in front of me, and there would be times when I would push too far. It was he who announced when sessions were over, after ostentatiously checking his watch. "Otherwise, it would feel like you're kicking me out." Sometimes he started checking very early, and noticed my noticing.
From our second session on, I met with Joe in the warmer atmosphere of our out-patient clinic. He was my first appointment of the day, and he always arrived early. He would nod at me in the waiting room, and I could have sworn he looked proud to have gotten there first. Even sitting down, he was an imposing presence in the room. With its earth-toned rooms and wood furniture, the clinic was easily my favorite among the many in which I'd worked. Room one hundred ten was a quiet haven in forest green and beige, with the exception of the white-faced clock on the wall behind Joe's head; it had a thick black second-hand and was a constant reminder of time ticking by for him. I was glad he was facing away from it. We sat across from each other, beside a half-round walnut desk that could serve as an armrest, or, if needed, a buffer. I watched his beautiful hair gradually disappear along with his eyebrows, and he began wearing hats that he had carefully picked out in advance. First, he opted for a tan fedora, while he considered and ultimately rejected a Stetson, laughing at his cowboy fantasy. Finally, he decided on two Yankees caps with his granddaughters' pictures on the back. He alternated between Charlotte and Isabel every week, mentioning his hair only once, to say he preferred wearing the girls on his head instead.
By the time I began seeing Joe, I had become unsatisfied with the way I'd been trained to think about denial. Sometimes, it seemed as if the idea of respecting it had more to do with justifying our own need to protect ourselves from our patients' (or our friends' or our loved ones') fears, than with their need for a reality buffer. After all, ultimately, they are our fears too, both for ourselves and the people we love. People who are dealing with severe or terminal illness may learn early on to shield us from what they really think and feel. They know how threatening it would be. And they're often right.
I knew that from personal experience. It was why I had decided to go into my field in the first place. My friend Laura was a Mathematical Logician, smart and resourceful, and, when I was with her, I acted as if she'd outlive the rest of us despite the aggressiveness of her cancer. The median survival time for women with her stage of breast cancer had been eighteen months, but she lasted six years. She died just short of her fortieth birthday.
It wasn't until after Laura's death that I decided to study Psycho-oncology. At her memorial service, I wondered how my reaction - or lack of it-had affected her, whether I'd been any help to her at all during the six years she fought her cancer. She hadn't been the one who'd hidden from the facts. I had.
Another problem with the concept of denial was what seemed an overly simplistic assumption that it was a kind of steady state, some foreign country one might inhabit, as in, "She's in a state of denial." Some theorists consider it a particularly immature stage that ultimately gives way to more advanced forms of coping. In my experience, however, it always has seemed much more complex and dynamic than that, as if we constantly navigated between knowing something we would rather not know, and actively trying to un-know it at the same time.
Studying the research on denial wasn't particularly helpful either because of its inconsistency. Noting the disarray, some took the common sense approach, suggesting that people who were terminally ill needed to stake out the middle ground, to be able to actively confront the reality of their situation, without being fatalistic about it. But the bottom line question remained: what did it mean exactly to confront your illness without being fatalistic if the objective fact was that you likely had little time left to live? If a woman with late stage kidney cancer spends her days planning a big summer vacation in St. Thomas next year, is she fighting bravely or refusing to confront the reality of her impending death? Further, medical science is constantly evolving and sometimes cancer treatment seems to improve with each passing week. Who was I to judge the realism of my patients' hopes? Or even to assume the books would still be accurate in six months? Who was I to assume that what held true for a majority of people would necessarily do the same for Joe? It had been decades since the doctors told my mother that my father didn't have a chance. And he was still around, playing with his grandson.
On the surface, Joe showed a great deal of the fortitude and fighting spirit described in the research literature. Though he felt he had gotten a very raw deal, he set his sights on five good years. He knew it was statistically unlikely, but felt it was worth trying. He came to every appointment, and organized a sophisticated database of his many medications and treatments. Despite some gradual weight loss, Joe usually came to our outpatient clinic full of pep, with a sketchpad in the crook of his arm in case he passed any scenes worth drawing on the way in. He even added extra time just for that purpose. He liked to draw family portraits as well, and I often found him in the waiting room regaling the secretaries with stories about his granddaughters.
Joe also could be a lot of fun, and his impersonation of his oncologist's glum, just-the-facts-ma'am interpersonal style made us both laugh, even when the news wasn't good. Though he continued to be concerned that friction with his daughter would interfere in his relationship with the girls, he didn't let that get in the way of enjoying their company, or pointing out pretty things in the park, or walking through his neighborhood with them, bellowing silly songs. And he was proud of his wife, "fine-looking woman, fine," who knew everyone in the neighborhood. Probably the biggest endeavor Joe undertook during our treatment was a big camping trip in the Adirondacks, which included not only Joe and his wife, but Maureen and the girls as well.
There were other times, though, when I wondered if Joe's denial might hurt him more in the long run. While he refused to discuss anything that might relate to end-of-life issues, his fear of dying often lurked just beneath the surface. For example, he was terrified that something dreadful might befall family members; he couldn't acknowledge even the possibility that he might be the one to leave first.
One day, he heard what he thought was never heard at our hospital. The words stuck in his throat as he described it to me. During one inpatient stay for dehydration and fevers, he had overheard the medical team tell the man in the next bed there was nothing left they could do for him. Joe thought he was crying for his poor roommate. He couldn't accept the possibility that he might also be crying for himself. In fact, he told me with pride, he almost never expressed any fear, even his to family. Except for one instance when he lost control in front of his wife, the only people to see his tears were his oncologist, whom he always saw alone, and I. It was inevitable that he would be more vulnerable in his physician's office, since it was the point of actual collision between hope and reality. But I thought it an act of strength and courage on Joe's part to show me his suffering.
Then, he brightened up, as he spoke in slow and deliberate tones.
"If it's my turn for that speech one day, someone will lead me to a secret room where there's this man in a long white coat. He takes a vial out of his doctor's bag and quietly hands it to me, some secret experimental drug.... I know it sounds silly, but I really believe it."
Joe laughed, eyed me carefully and suddenly said, as he would many times like a mantra, "Hey, if I can't see the ghost, then maybe the ghost can't see me." I wondered how he would cope if reality started slapping him in the face more and more in the days to come.
There were also ways in which Joe disengaged from his medical treatment despite his general enthusiasm for it. He continued to smoke, which he refused to discuss, ostentatiously popping a peppermint Altoid into his mouth instead. And he barely mentioned the mild chest pains that concerned Maureen enough to inform the team about them. Just a little heartburn, he figured, even when they started intensifying. He was annoyed that she had even bothered them.
It turned out that there was something else Joe was hiding. What he had described as a moderate amount of alcohol could be over a dozen mixed drinks at a sitting. In fact, he had a long history of minimizing alcohol abuse. And though he initially denied using other drugs, I would later hear about some marijuana, with an almost Talmudic discussion of why he felt it didn't constitute actual drug use.
"Have you mentioned the drinks to Dr. Shapiro, in case they affect your treatment?" I asked.
"I knew I shouldn't have told you. Look," he scolded me, his voice rising sharply, "I'm dying. And you want to take away MY CANDY?!"
Well, he did have a point. But it also stood in stark contrast to his hope of shooting for five or ten years, particularly when it was smoking and drinking that likely had contributed to his cancer in the first place.
"I'll mention the drinks to Shapiro, okay?" he said coolly.
"Hmm," I decided to push a little. "How does Maureen feel about your drinking?"
Joe paused a moment. "Yeah, it bothers her. But it's never been a 'problem' for me," he said, emphasizing the word "problem" by raising his voice and drawing imaginary quote marks in the air. "If it bothers her, that's her problem." He had no more to say about it. Focusing on surviving his cancer may have given Joe hope, but it also made his relationship with his daughter feel less urgent than it really was. I hoped for both their sakes that they would be able to make amends before it was too late. I decided I'd pushed enough, and kept the thought to myself for the moment.
Still, I often was conflicted about how to respond to Joe's hopeful denial. At times, I even found it a little contagious. When I looked up the five-year survival rates for his level of disease, I found that they were so low, a number wasn't even given. Below a cancer with a ten per-cent survival rate, I found his. "Five-year survival very rare," was all it said. "Well," I thought, "very rare isn't the same as zero, is it?"
It wasn't merely an issue of rooting for Joe. My job was to help people with cancer cope with an existential crisis, whether or not their treatment succeeded. But I couldn't help them get what they really wanted, a cure or, at the very least, more time. When their treatment failed them, sometimes I felt like the consolation prize, a bystander looking on while the medical team conjured up whatever magic they could for the real fight. If Joe miraculously got his wish, at least I'd feel like part of the victory team.
There's always a danger of over-identifying with patients in Joe's situation. For one thing, I thought of Laura. She'd managed to hold on four times longer than the statistics suggested, traveling around the world, teaching her students, and making delicious Thanksgiving dinners for visiting friends, like Rob and me. Then there was also our shared mortality. For all I knew, somewhere there was lurking an oncogene with my name on it. How would I face it? The question would come and go quickly. It was my job to focus on Joe's coping needs, not my own.
And while his coping style helped him fight, it left him totally unprepared for possible bad news to come: increasing chest pains, a bad CAT scan, shorter and shorter breaths. I thought about Maureen and about his sister; they seemed to be on his mind but he allowed himself no outlet for expressing his feelings about them.
Finding a balance was my constant struggle. Sometimes, I let denial be my best friend. Often, I was either silent or more overtly supportive, and at times, I gently interpreted. Sometimes, though, I queried him further about his thoughts and feelings at difficult moments, until he would say coldly, "I don't want to go there." At times, Joe would remind me of his philosophy about the ghost but at other times, he would surprise me.
"So, what if you do get your five good years," I asked one day. "Or even ten? What would you want to do with them anyway?" Joe raised one nonexistent eyebrow, and took a while before responding.
"Well, I'd like to work with underprivileged kids, maybe Head Start, or I think I'd make a good teacher." As he rattled off a few more possibilities, I noticed they all revolved around children. He had noticed it too. His voice grew softer. Perhaps, he wondered aloud, he might really be thinking about Maureen. Maybe he hadn't been such a good parent, especially during her early years when he had been drinking more and might have been a little belligerent. Maybe a little more than a little. It occurred to him that perhaps his increased irritability during his illness reminded her of the bad old days. Maybe, he added, he was also thinking about his sister. Had he been getting too much of their parents' attention? He was always getting into mischief. Is that why they missed her symptoms?
We both agreed that these were issues for us to deal with now. We made it clear that it was in no way a suggestion that he might not live as long as he hoped. And that was the truth.
Joe worked hard during the rest of his therapy, cutting down significantly - though not completely -- on his "candy," and becoming a little more sensitive to Maureen's concerns. She gradually invited him to spend more time with the girls, even to baby-sit when he felt up to it. While away on their camping trip, he surprised her by handing over the reins and leaving the itinerary up to her. He was particularly proud of relinquishing control, and he knew from the look on her face that she appreciated it.
"Even if they don't remember their grandpa, they'll always remember that trip I gave 'em." His voice cracked. "They all will."
A month later, Joe's wife threw him a large fiftieth birthday bash, and friends and family came in from all over the country. Joe loved the attention, but still, it felt like going to his own wake. Nevertheless, he was proud of rising to the occasion, and even said a few words, making sure to keep them light. He asked his daughter to dance, and he exchanged I-love-yous with her on the dance floor. He blushed when he described for me how they had kissed in the middle of the floor, with all eyes on them.
Soon, Joe started to get more and more fatigued. He had a dream about reuniting with his sister. He described a small wood house, a ladder leaning against it leading up to the roof, a slow ascent culminating in the knowledge that he was dead, and, finally, an embrace with the waiting eight year old girl who'd been taken from him so many years before. "Don't be afraid," was all she said.
"Hey, don't get me wrong," he told me, wiping an escaping tear from under his right eye. "I still want my ten years. But if I don't get them, well, at least I'll see her again." On some occasions, he spontaneously talked about his fears of dying, the things he'd like to do if given the chance, the helpless feeling of living from CAT scan to CAT scan. Other times, he gladly invoked his right not to look the ghost in the face, and I didn't stand in his way.
And then one morning, I beat Joe to our session. I suppose I sensed something wrong from the moment that I arrived at the clinic and found a Joeless waiting room. But it wasn't a thought, just a vague uncomfortable heaviness in the pit of my stomach. I waited fifteen minutes before calling Admissions to see if he was in the hospital, even though he always notified me when being admitted. Finally, I called the charge nurse on his floor. High fevers, sepsis, a relatively quick death, and no chance for me to say good-bye. In an interesting example of denial - this time, my own -- I was aware of both knowing and not knowing every step of the way until I could no longer hide from the facts.
I felt heavy, stunned, as I thought about the day ahead, full of sessions with people who were still fighting their disease, and who needed help coping. I looked at the clock on the wall. At least I had the twenty remaining minutes of our session before the receptionist would buzz me for my next patient. I remembered my first patient's death, and how I'd wished I could have taken the rest of the day off to indulge my sad meditations. But by now, I had gotten used to the routine, and actually preferred continuing to work, to feel like part of the fight again. I thought of Charlotte and Isabel, and wondered what they'd be doing now that I would no longer get to hear about them. I was startled out of my reverie by the high-pitched rrring-rrring announcing my next patient. My twenty minutes were up.
Sometimes, it seems that when people talk about denial, they are referring to a theory that relates courage simply to the ability to stare death in the face. But denial and courage are complicated business. Sometimes, courage takes the form of knowing what you want, or simply of having a sense of humor, or of admitting you're afraid. And, sometimes, it takes the form of recognizing when you don't have the strength to see the facts plainly, and need to be distracted. In the end, perhaps the bravest thing we do is simply to go on however we can, staying connected and finding beauty in a world that so casually goes on without us.
Though these are true stories, all identifying information has been changed.