Denial and “Middle Knowledge”

Patients often seem to know and want to know about the gravity of their illness, yet they often talk as if they do not know and do not want to be reminded about their cancer.⁹ Weisman used the expression “middle knowledge” for the space between open acknowledgement of death and its utter repudiation. Patients may deny facets, implications, or mortal threat of an illness.⁹ Middle knowledge is most apparent at transition points (such as a recurrence of cancer). However, denial is an unstable state, almost impossible to maintain against even the reluctant patient’s inner perceptions. To preserve a relationship, patients often deny their knowledge of impending death to different people at different times.¹⁰ Tactful discussion of mortality allows patients to be responsive to those most close as long as possible.⁹

Hope and the Doctor-Patient Relationship

Physicians convey respect by exploring the patient’s capacity to cope. That respect allows the patient to nurture courage and resiliency.¹¹ Trust between the patient and the physician is borne out of mutual respect. Patients regain a sense of control as they appraise and reappraise what choices to make. Presenting the facts about an illness does not break trust between a patient and a doctor. Furthermore, hope is not merely related to prognosis. The patient’s capacity to hope is also related to an ego ideal and to the conviction of one’s influence on the world. As the physician sustains the patient’s self-esteem, a sense of purpose adds value to life regardless of the time frame. The psychiatrist’s capacity to listen to a patient in a nonjudgmental way allows patients to express doubts and weaknesses, to accept who they are and why they see things as they do. The physician’s presence there protects patients from abandonment and offers a place where they can explore what is meaningful.^11,12

Medical Choices

The psychiatrist also clarifies with the patient the medical understanding of what choices are feasible. Unfazed by personal shock, anxiety, and denial, and armed with a medical education, the psychiatrist is in an excellent position to understand (better than the patient) the individualized medical plan. Diagnosis, treatment, and prognostic decisions are complex as set forth by medical experts. As the psychiatrist learns how the patient thinks, and if necessary, adds appropriate psychopharmacological treatment for symptoms or Axis I diagnoses, the psychiatrist can maintain a focus on necessary anticancer treatments that are most likely to give the best outcome. Focusing on problems, setting priorities, making clear what the patient is doing and not doing about a problem, and exploring strategies are key elements of care. This technique allows patients to make the decisions that are most critical to them. Meanwhile, the psychiatrist, in collaboration with oncology staff, sorts through differential diagnoses as new psychological symptoms develop and the medical condition and treatment progress. The psychiatric assessment includes evaluation of physical symptoms, psy chiatric diagnosis, and the differential diagnosis. The work includes education about how to support significant others and how to allow help or to relinquish control to those who have shown themselves trustworthy. The goal of honest communication is to support acceptance, to reduce bitterness, and to replace denial with the courage to confront what cannot be changed.¹⁰

Distress

In the study of newly diagnosed cancer patients, Weisman and associates found that the peak of distress varied from 1 or 2 days to 3 months, but that the intense distress lessened over time.¹³ Those more depressed and anxious, who had less financial and social support, more alcohol abuse, more troubled relationships, and more burden from illness, were more distressed. The researchers learned that high-risk patients were unable to generate a number of alternate coping strategies.⁷ Vulnerable patients tended to overuse strategies that were ineffective for finding relief and resolution. Weisman and associates defined a treatment to reduce distress, to correct deficits in coping, to reclaim personal control, and to improve morale and self-esteem. Patients were asked to examine their plight in relation to cancer (their current concerns); to articulate their understanding of what might interfere with good coping; and by looking beyond, to use options that were feasible for finding satisfactory solutions. Staff took the view that change was possible and that patients could be helped to take steps on their own behalf, as problems were broken down into manageable proportions. They focused on coping and adaptation rather than on psychopathology; they conveyed an expectation of positive change, a sense that options and alternatives are seldom completely exhausted, and an awareness that flexibility in perceiving problems helps to attain additional information and support. They compared a brief psychodynamic and behavioral technique; both were effective in reducing distress and denial.⁷

Screening

Weisman and Worden defined a screening instrument and a concise interview to identify patients at high risk for psychosocial vulnerability and ineffective coping (because those individuals were most apt to benefit from psychosocial intervention). To make screening more efficient, Zabora and co-workers validated the Brief Symptom Inventory–18¹⁴ to the Index of Current Concerns (now a Brief Symptom Inventory–11)¹⁵ to identify the more anxious and depressed patients with more somatic symptoms and distress. To call attention of oncology staff to distressed cancer patients, Holland and colleagues in the National Comprehensive Cancer Network (NCCN) guidelines operationalized a visual nomogram (a distress thermometer score ≥ 5) with a variety of needs assessed.¹⁶

Psychosocial Interventions

Weisman’s work foreshadowed major studies of preventive psychosocial interventions for cancer patients. Fawzy and colleagues^17–20 described a 6-week structured group intervention for patients with melanoma Stage I and II; it included health education, stress management, coping skills, and supportive group psychotherapy. They also taught simple relaxation exercises (e.g., progressive muscle relaxation, guided imagery or self-hypnosis, as well as problem-solving and coping methods). The interaction of the patients within the group provided a source of emotional support.^17–20 The group with 6 weeks of treatment had a survival benefit at 5 to 6 years, but this comparative benefit was not as evident in the tenth year.

Spiegel and others developed a group therapy supportive-expressive intervention for women with metastatic breast cancer. In two randomized multisite studies, the benefit for survival has not been found, but the ability of this intervention to reduce distress, to offer patients social support and safe conduct, and to increase their ability to confront difficult challenges has been documented.^21–24

Chochinov²⁵ focused on conserving dignity at the end of life by asking patients what they feel is most important and what they want their loved ones to remember. Informed by the work of Frankl,²⁶ Greenstein and Breitbart²⁷ and Breitbart and colleagues²⁸ reported on a group intervention for advanced cancer patients who focus on faith and meaning.

Combinations of interventions augment patients’ coping skills.²⁹ Teaching about relaxation has had a benefit for cancer patients,^29,30 and a variety of educational interventions, tailored to disease type and phase (e.g., stress management, cognitive therapy, and behavioral training), have improved coping and decreased distress.³¹ As parents with cancer worry about their children, Rauch and Muriel³² have offered guidance.