Am Fam Physician. 1999;60(5):1556-1559
I met the patient, a 57-year-old farmer with end-stage cancer, while covering for a colleague on leave. The patient, accompanied by his wife, had been making frequent office visits for the management of severe pain and progressive weakness. He was seething with anger at his worsening condition but, at the same time, he was in impenetrable denial that his symptoms could be caused by cancer. I offered him a referral for hospice involvement, but he vehemently refused.
As the patient deteriorated, I tried to discuss what the cancer was doing to his body and to relate the disease process to his symptoms. I repeatedly tried to convince him to accept hospice care. I tried to help him consider the effect that his illness had on his wife. At one visit, I was more direct than usual: “It's the cancer . . . it's killing you . . . please let your wife say good-bye to you.” She leaned over abruptly and embraced him in a strong grip, crying hard. He squeezed her to his side in a loving embrace. Leaving the room to allow them privacy, I heard him say, “Now go sit down. This is nonsense. Be quiet now.”
By this time I'd run out of tools in my toolbox and gave up trying to help the patient confront his denial. Two weeks later he died in his sleep. When his wife found him, she frantically called 911. First, she begged them to help him: “Do something,” she implored. Moments later, she screamed and told paramedics, “Leave him be.” If only hospice had been involved.
This case presents a complex challenge for any physician, and the difficulty is compounded by the absence of a preexisting doctor-patient relationship on which to build. The primary complication presented in this case is profound denial that presents a major obstacle to all of the end-of-life care this physician wants to offer.
Denial is a common coping mechanism for those facing a terminal illness—most people use denial to one degree or another, denying some aspects of their illness at least some of the time. This denial may fluctuate widely on a day-to-day, or even a minute-to-minute basis. For this couple, “impenetrable denial” obstructed any ability to plan for the inevitable, as well as any opportunity for them to say goodbye to each other and to review their lives together. We might ask why this man is relying so completely on denial as a coping mechanism—that is, what purpose is denial serving him?
People who face a terminal illness experience difficult emotional challenges: loss of control, loss of roles and responsibilities, anger, guilt, loneliness and isolation, and spiritual crises. Anyone who confronts such challenges will do so out of his or her own life experience—experience that leaves each of us with unique emotional strengths, vulnerabilities and coping styles. When a person finds the challenges too overwhelming, denial may be the coping strategy that “works.” Denial—the patient's refusal to take on board the bad news1—serves a protective function by keeping at bay that which is damaging to our view of ourselves or our future.
Critical to our response to denial is respect for the essentially protective nature of it. We must understand that it serves a healthy purpose in many instances, and we need to demonstrate that we are prepared to allow patients to have their own responses to their own life situations. Seek first to understand and validate before attempting to change anything. Rather than judge a patient's reactions to his illness as inherently “good” or “bad,” we might better ask, “Is this reaction/response helping the patient cope with his challenges?”
In general, respect and support for the patient, including his defenses, yields far more therapeutic benefits than trying to change or override such defenses. Even when the defenses are extremely maladaptive, encouraging their positive aspects and building on them as strengths is more likely to be beneficial than confrontation and attack.2
This physician speaks eloquently of having “run out of tools in my toolbox” to deal with the problem. We can indeed acquire and sharpen the “tools” of listening and responding more effectively. Let's turn to the specifics of this case presentation, as we develop additional tools to build communication with this family.
Despite his denial that “the cancer could be causing the symptoms,” we are told that the patient continued to come in for frequent visits. I would want to gently explore his understanding of the cause of his pain and weakness, along with his motivation for coming in to see the physician: “What is your understanding of the cause of this pain? What do you think is making you so weak? What can I do for you today? How can I best help you?”
By the patient's frequent return visits, he is clearly indicating openness to some sort of alliance with this physician. I would attempt to establish an alliance around the relief of pain. The trick will be to determine what his goals are and to demonstrate respect for them. The relationship can be strengthened by building on this opening and meticulously attending to his goals, whatever they are. That may be enough to open up the other issues. Build up slowly to a mutual understanding of the current situation: “You have been having a lot of pain . . . We have done a number of tests . . . The results show that . . . This means that . . .” As the narrative continues, the physician is feeling an urgent need to focus the couple on the rapid progress of the disease and the likelihood that the husband will die soon.
A good policy for breaking bad news is to move slowly and let the patient dictate the pace: “Of course, I don't have a crystal ball. However, in my experience with people with tumors like yours, things often change quickly when the tumor has spread to so many different areas. I wonder if you have any questions about what comes next.” Also important is an explanation of the pain: “As best as I can understand this pain you have been experiencing, it comes from the cancer that was found last year . . . The cancer has spread to your bones.”
At times, a more urgent discussion is required because of rapid clinical deterioration. When a more direct approach is dictated by clinical urgency, we must retain as much respect as possible for the patient's personal choices about coping, while expressing our concerns in as balanced and clear a way as possible: “I know you try to maintain as optimistic a view as possible about the cancer. I want to support your hopes about this. At the same time, I want to be sure that we have covered the decisions that need to be made if that is not how things turn out. We need to discuss . . .”
The physician's description of this denial as “impenetrable” speaks to a deeply felt need on the part of the physician to “break through” the denial and force recognition of what is happening—to impose the truth on the patient and family. I would like to suggest that we examine why we feel such a profound need to “penetrate” denial.
Many physicians feel helpless in the face of a patient's struggles with the monumental issues raised by a terminal illness. One common response is simply to disappear—all too many physicians take the view that “we have done all we can,” and then abdicate, leaving the care of the patient to other members of the health care team or the family. Another common response to the physician's feelings of helplessness is a need to take control, to “fix it.” Doctors tend to be most comfortable when they can “do” something—prescribe medications, order tests or even develop new communication skills. But among our greatest challenges is defining our role when all of our activities have become irrelevant. I believe that this is an essential part of the challenge we face in this case. Although we can work to open more effective communication on the subject of the patient's process of dying, what we see as best may not be what he can or will choose for himself.3
Sadly, not every dying person comes to terms with what is happening in a way that is clear to the outside observer. This does not mean that the individual's way is wrong, for we each create our own definition of “dying well.”4 And sometimes, the most helpful service we can provide is simply to accompany a patient and family down a path they have chosen but which we cannot understand. To do this requires that we move beyond the “toolbox” and bring only our essential humanness to the bedside.
Caring for the dying is remarkably challenging work. It can also be remarkably rewarding. If we meet the deeper challenges requiring our presence as human beings, this work can be among the greatest privileges of being a physician.