Communication:

Supportive Bridge Between Cancer Patient,

Family, & Health Care

Staff.

by Paul Shields

ANCER-perhaps no other word in the English language has the power to create greater terror in the human heart. Both the cancer patient and his or her family are traumatized by the diagnosis, and frequently

the ensuing confusion leads to bewilderment, mis- understanding, and communication breakdown between patient and family.

As humans, we all sustain a psychological need for omnipotence and invulnerability, and tend to avoid circumstances that challenge our distortions of mortality. Cancer symbolizes the end of one’s delusion of immortality, and demands that one begin the painful process of becoming reconciled to the reality of non-existence.

In his book, Denial of Death (1973), the late Ernest Becker, himself a cancer patient, related how much of humankind’s collective feelings of in- security are created by the knowledge that death is inevitable. We cope with death by convincing our- selves of our omnipotency and our immortality, for to accept our mortal condition is to acknowl- edge feelings of powerlessness and helplessness. Humans, Becker stated, are in the dilemma of hav- ing personalities like gods, and bodies like animals.

Thus we are involved in an endless search for meaning and purpose in our lives. The “life pur-

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pose theme” has received much attention from authors writing about the existential perspective. Frank1 (1 963) observed during his incarceration in World War I1 Nazi concentration camps that those who survived did so because they created a purpose for staying alive. Hutschnecker (1977), after three decades of medical practice, believes that people die because they have given up their “will to live.” May (1979) contends that the individual will be unable to see the truth about himself until he is ready to come to decisions about his own existence.

Society does not seem to support the search to resolve decisions about our existence. Rather, ex- pedient distractions emerge in the form of sub- stitute “solutions” such as wealth, beauty, power, and status. Primary human needs such as accep- tance, belonging, trust, dignity, meaning, and pur- pose often are not identified until one experiences an “existential dilemma,” that is, a crisis challeng- ing the basic beliefs upon which an individual builds a sense of purpose or meaning in life. The most powerful of these crises is the awareness of one’s inevitable death. When a reassessment of life does occur under the stressful circumstances of possible death, one is thrust into the conflict- ridden position of finding a delicate balance be- tween basic human needs and the convenient surro- gates of Western culture to satisfy internal strife.

The essence of caring is distorted when values are displaced on the conditional nature of the status of an object, idea, person, or attitude, rather than the meaning such entities bring to personal ex- perience. One patient aptly summarized his ex- perience with reassessment when he said, “I quit looking for the best fishing boat I could afford and started thinking about how often I wanted to go to the lake.”

INTERPERSONAL SYSTEMS OF INTERACTION

Aside from existential conflicts facing the cancer patient, there are other burdens more debilitating than the disease, such as the attitudes and behavior of family members, friends, and the professionals involved in the patient’s treatment.

Conspiracy of Silence

For years, the critical question confronting on- cology professionals has been, “Should the cancer

patient be informed of the diagnosis?” In a 1977 study, 97 percent of responding American physi- cians concurred that it is better to explain the ill- ness and describe the scope and expectations of treatment than to withhold the information from the patient (Israel, 1977). The 1977 finding was vastly different from the results of a study done in 1961 in which 90 percent of the physicians polled indicated they preferred not to reveal the diagnosis to their cancer patients (Novack, 1979). The general position of European physicians, however, is to withhold the information, resulting in bitter conflict between physicians on both sides of the Atlantic (Israel, 1977).

Since most contemporary American physicians take the position that the patient should know, the real communication issue is not “to tell or not to tell,” but rather, to determine how much to tell and in what manner to do the telling. According to Holland (1980), knowing the patient’s coping style with other life stresses provides the physician with an idea of how much information the patient can comprehend and withstand at a given point in time. When combined with openess, professional sensitivity often leads to the development of trust between patient, family, physician, and others on the patient-care team.

The family should know the same explicit facts as the patient, otherwise, a “conspiracy of silence” may develop. Silence is one of the most destructive forces to patients and families, for out of it grows more distortions of communication, misunder- standings, and hurt feelings. A variation on the “conspiracy of silence” theme occurs when a spouse or family member insists that the diagnosis be withheld from the patient. The potential for psychological harm increases when the patient dis- covers the lie. A feeling of betrayal is inevitable.

Thus, the most critical problem arising between cancer patients and their families involves a break- down in communication between them, as is illus- trated in the following anecdote:

Mrs. M, the wife of a cancer patient, confided to the counselor during an initial interview that she was being gradually shut out of her husband’s life. While shedding copious tears she said, “I don’t know how to stop this from happening, it’s tearing me apart inside.”

The counselor learned that she had not shared these thoughts and feelings with her husband out

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NURSING

of fear of “burdening him with more problems. God knows he has had enough already.’’ During the counseling session, several concepts of com- munication dynamics were shared with the wife, including “I messages” (Gordon, 1975). An “I message” is a structured statement containing three basic components: (1) a feeling, (2) a behavior, and (3) a consequence. For example, the following communication has all three compo- nents: (1) “ I feel really hurt (2) when you don’t speak to me (3) because I imagine I’ve done something to offend you.” After practicing her newly learned skill in role playing, Mrs. M applied it at home with her husband. In her second interview with the counselor, Mrs. M seemed happier. She said, “I was doubtful at first, worried that I might hurt him. But just the opposite occurred. I was real- ly surprised. My husband said he had been feeling like a burden to me. He didn’t want me to know. He thought I would consider him emotionally weak. Nothing could have been further from the truth. We discovered how hard we had been trying to protect each other from hurt and disappointment, when actually we were hurting ourselves and each other by not discussing our concerns.”

Further conjoint sessions with Mr. and Mrs. M focused on identifying ways the couple could give and receive emotional support. Eventually, both the patient and his wife were able to regain intimacy through their shared experiences and improved communication.

Ijnexpressed Feelings

Unexpressed feelings provide fertile ground for problem development, not only for cancer pa- tients, but the whole human population. Too many times cliche phrases, such as, “You should be strong at times like this”; “Don’t cry, she will think you are weak”; “Try to be cheerful”; or “Don’t get angry” are offered as well-meaning ad- vice. The patient attempts to abide by these “moral imperatives,” all of which demand a distortion of true feelings. At the same time, the family members are responding to the patient in a similar manner. The result may be chaotic. Each member knows what is happening, but assumes the other doesn’t, and each is fearful of breaking the destructive silence. The process stymies any possibility of an effective problem resolution. It also guarantees the perpetuation of undesirable feelings.

A substantial number of mental health profes-

sionals, including Satir (1972) and Gordon (1975), and many patients with chronic disease agree that open communication is the sine qua non for living effectively. The more openly a family confronts the problems that arise, the more capable it will be to manage those problems. Such communication efforts, as reported by patients, lead to their feel- ing less isolated from loved ones, more autono- mous and in control, and more hopeful about treatment outcome.

Family Hovering

Often family and friends will gather about the pa- tient for no apparent purpose other than to be close by. While the behavior appears harmless, “hover- ing,” as this behavior is called, can contribute to serious problems between patient and loved ones. Hovering, often a result of pity or a sense of helplessness, nonverbally communicates to the pa- tient the dreaded implications of the illness. The more indirectly or covertly persons communicate, the greater the potential for dysfunction (Satir, 1967).

Hovering promotes helplessness, dependency, and depression, and often leads to another debilitating process in which family members begin to assume that they know the patient’s thoughts and needs without their being expressed. Thus, they respond to their own assumptions rather than to the patient’s needs. The result is an over- protective, suffocating atmosphere, in which the patient is reduced to little more than a psycho- logical/physical invalid.

The role of the “helper” to the chronically ill person is effective only when it is overtly structured and agreed upon by patient, family, and friends. The rigid attitude of “I know what is best for you,” is not as productive as the more flexible, “I will work with you in finding out how I can be most helpful.” An atmosphere in which each person knows what is perceived as supportive behavior, and what is not, will significantly contribute to the cancer patient’s vital need to regain a sense of autonomy and control over his or her life. Mrs. H is a case in point.

While hospitalized for routine chemotherapy treatments, Mrs. H, a 44-year-old patient, re- quested a conference with the oncology counselor. She complained of feeling “totally exhausted all

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the time.” She knew the effects of the chemo- therapy treatments contributed to her condition, but she also knew, as she told the counselor, “I sometimes feel so depressed I don’t want to leave my bedroom.” In discussing her condition, the counselor learned from Mrs H that she had been constantly in the presence of relatives or friends since her diagnosis, which had been made three months before. Her relatives’ and friends’ visits had increased as her depression became more ap- parent. She said, “I appreciate so much their con- cern for me, and I just can’t tell them to go away. They want so much to help.’’

After a discussion of some alternatives, Mrs. H decided on a course of action. Two weeks later the counselor received a call from Mrs. H. “Things are much better now,” she said, her voice filled with enthusiasm. “The day after I returned home from the hospital I called a family conference. Almost everyone who visited me came, expecting, I think, a farewell speech. I told them all how much I loved them and how much I appreciated their concern for me. I told them I was ready to let them know exactly how they could be most helpful to me at this point in my treatment.” She repeated the gist of her conversation: “Because I need time to myself and because I want to visit with each of you I have decided to arrange a schedule for myself. In this way you will be providing me with an oppor- tunity to spend time alone-time I feel is impor- tant to my recovery. I’m sure each of you under- tands what I mean.”

There was some protest, Mrs. H said, “But I stuck to my guns. Now I spend time alone, and time with my friends and family on my terms. They seem happy now to go along with my schedule because I am happier.” She added that she liked the idea of family conferences so much she had in- cluded them in her weekly schedule.

Systems of interaction, such as the conspiracy of silence and family hovering, develop, in part, because of the cultural and moral expectation of family roles to provide needed comfort and stabili- ty during the cancer crisis. However, family roles can become the primary obstacle to the successful management of stress if they are not flexible and capable of being shifted with the unprecedented demands of the cancer experience. When a family member is hospitalized, unable to perform usual tasks, or threatened by death, unspoken family

rules of communication often need to be revised and family roles modified, and this inevitably evokes anxiety in family members (Cantor, 1978).

False Reassurance

Another problem that can arise between cancer patients and their families is “false reassurance.” Patients confide that they expend valuable energy coping with difficulties arising from this kind of “reassurance.” It is a commonly held belief that anxiety-provoking information creates problems for the patient. Not so. The true nature of the pro- blem is rooted in the response, not the informa- tion. When a topic, problem, or major concern emerges, talking it through to its conclusion will generally provide tangible, productive results. Anxiety, for example, is not diminished by such Utopian cliches as, “It will all work out,” or “You’ll be just fine,” or “Hang in there and hope for the best.” In fact, meaningless phrases fre- quently create the opposite effect by blocking an opportunity for the patient to discuss important concerns. For example, patients can be helped to manage anxiety by being instructed in relaxation and desensitization techniques, but they often need first to be allowed freedom for expression of pent- up thoughts or feelings.

INTRAPSYCHIC PROCESSES

The “Will to Live”

When humans are challenged by a life-threatening crisis, the natural instinct known as the “will to live” is activated. This instinctive response is a vital force influencing the quality and frequently the length of life. One way to strengthen the will to live is for the patient to become actively involved in fighting the disease (Rosenbaum, 1980). For several years, helping the patient face death has been the most common approach professionals have used in working with cancer patients, but re- cent evidence suggests this process is being im- plemented prematurely by the oncology staff.

In his work with patients at Baptist Medical Center in Oklahoma City, Richard Pohl observed that little emphasis was being placed on living with cancer. A former member of the Medical Center’s

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rehabilitation team, Pohl demonstrated that pa- tients and families can be taught the “will to live” by approaching cancer as a “chronic rather than always fatal disease, by becoming active parti- cipants in their recuperation rather than passive recipients of various medical therapies, and by creating a family emotional support system which coincides with an optimal rehabilitation emphasis” (Pohl, 1980).

Through special family conferences, the patient and selected family members are educated in the practical application of refining the “will to live,” which involves understanding the many viable op- tions available for living and managing the disease. Invariably, according to Pohl, those who are most successful become active participants in their own rehabilitation. Becoming an active participant in- volves learning about the nature of cancer, cancer treatment, and healing, while receiving realistic interpersonal support.

Mental Attitude

The mind’s role in causing and curing disease, particularly cancer, has been heatedly debated. Nevertheless, speculation persists over scientific evidence that we possess the mental ability to heal disease and illness. Most health professionals would agree that a relationship does exist between our mental attitude and our physical health. While mental attitude may not cause disease, it can be a factor influencing prognosis in any illness (Rosen- baum, 1980).

The oncology staff can attest to the different ef- fects of cancer on patients. Some are destroyed, while others calk upon their inner “reserve” for sustenance. What makes the difference? Why do some patients adapt to suffering while others do not? The difference in response lies partially in the observable effects of their attitudes toward life constructs. Living in the Present. -One common cause of un- happiness among individuals is their penchant for living their lives deferentially; that is, they habitually defer life’s enjoyment to some future time or event. Happiness is a mental habit, which if not practiced in the present, may never be experi- enced. Happiness can not be made contingent on external solutions. Life is problematical, as one

syndicated cartoonist expressed when he had a character say, “Life is a series of narrow escapes held together by sighs of relief.” Happiness is pro- duced by ideas, thoughts, and attitudes which can be developed by the individual’s own activity in- dependent of his or her environment (Maltz, 1969). Managing Emotions. -Those persons who have learned to trust personal experience are also able to accept in themselves a broad array of intense emo- tions. Unfortunately, in a crisis, “negative” feel- ings are often the first to be experienced. The in- dividual’s attempts to banish them frequently result in banishment of more acceptable feelings as well. The ability to suppress feelings, as a protec- tive response to crisis, is not sufficiently fine tuned to discriminate between which feelings should be restrained and which expressed.

Ironically, negative emotions are usually rapidly spent when allowed expression, and frequently they precede a period of “clear thinking.” It is possible to establish a productive pattern for living with one’s feelings when a healthy curiosity about “forbidden emotions” replaces the self-condem- nation typically associated with them. Once this at- titudinal shift has occurred, both painful and joyous experiences can be recognized as part of the human emotion spectrum (Cantor, 1978). Self-acceptance. -“No real success or genuine happiness is possible until a person gains some degree of self-acceptance,” stated the late Dr. Maxwell Maltz (1969), an international authority on self-image and creative personality. “The most miserable people in the world are those who strain and strive to convince themselves and others that they are something other than what they basically are.” According to Maltz, changing your self- image means changing your own mental picture, your own estimation and realization of that self, not “improving yourself.” Your “self” is what it has always been and all that it will ever be. You did not create it. You can not change it. Creating a bet- ter self-image does not create new abilities, talents, or powers-it releases and utilizes them.

To try to change what is unchangeable creates hopelessness, and hope is essential to the cancer patient. Hope is an essential ingredient of the will to live; a process that comes from within, pro- viding an inner commitment to feel better. In his now famous 1959 Academic Lecture to profes-

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sional colleagues, Dr. Karl Menninger said:

Hope reflects the working of the life instinct in its constant battle against the various forces that add up to self-destruction. Excess of hope is presump- tion and leads to disaster. Deficiency of hope is despair and leads to decay. But hope must be dis- tinguished from expectation. “We are saved by hope,” wrote St. Paul to some Roman Christians, “but hope that is seen is not hope; for what a man seeth, why doth he yet hope for?”

Nor is hope identical with optimism; optimism always implies some distance from reality, as Marcel points out, so that obstacles appear at- tenuated. The optimist, like the pessimist, em- phasizes the importance of “I.” But hope is hum- ble, it is modest, it is self-less. Unconcerned with the ambiguity of past experience, hope implies process; it is an adventure, a going forward, a con- fident search (Menninger, 1959).

References

Regardless of situational reality or the partici- pant’s emotional maturity, hope as a critical life process should be supported. Aside from the hope of cure or discovery of a new drug, hope may take the form of reconciling with persons or circum- stances with whom or which the patient feels es- tranged. Deeper still is the hope of being at peace with one’s self, and that life force which is greater than all of us (Verdery, 1972).

Whether we are the health care professional, the patient, or the patient’s loved one, we are all challenged by the intricate complexities of under- standing self and others. We need self-under- standing when confronted with frustration; when everything known is attempted and still the cancer wins. We need to understand the feelings and be- havior of the patient fighting an invisible enemy from within. The need to understand pushes to the foreground when the plight of family members who feel helpless and confused creates tangled pat- terns of adjustment which need to be unraveled and rewoven.

The essence of comprehensive health care is couched in understanding oneself, the person(s) in need, and the process of meeting those needs. It is hard work and much like a pilgrimage whereby learning occurs during the journey rather than at its end. One is effective as an instrument of healing only after taking charge of one’s concern for the human experience and the life purpose, which serves as an expression of that concern.

Becker, Ernest, Denial of Death, New York: New York Free Press, 1973.

Butt, Hugh R., “A Method for Better Physician-Patient Communication,” Annals of Internal Medicine,

Cantor, Robert, And a Time to Live: Toward Emotional Well Being During the Crisis of Cancer, New York: Harper & Row, 1978.

Cox, James, “Cancer-The Disease and Its Treatment, Myths and Realities,” Symposium on Cancer, Port- land State University, Portland, Oregon (April) 1979.

Frankl, Viktor, Man’s Search for Meaning, Washington Square Press, 1963

Freireich, Emil J . , “Should the Patient Know?” (Editorial) Journal of the American Medical Associa- tion, 241:928 (March 2) 1979.

Gordon, Thomas, Parent Effectiveness Training, New York: New American Library, 1975.

Holland, Jimmie, M.D., (interview with) “Understand- ing the Cancer Patient,” CA - A Journal for Cancer Clinicians, 30:2: 1980.

86~478-480, 1977.

Hutschnecker, Amold, The Will to Live, New York: 1977. Israel, Lucien, Conquering Cancer (translated from the

French by Joan Pinkham) New York: Random House, 1978.

Levitt, Paul, et al., The Cancer Reference Book: Direct and Clear Answers to Everyone’s Questions, New York: Delta Books, 1979.

Maltz, Maxwell, Psychocybernetics, New York: Pocket Books, 1969.

May, Rollo, Psychology and the Human Dilemma, New York: W.W.Norton & Co., 1979.

Menninger, Karl, Academic Lecture given at the 115th Annual Meeting of the American Psychiatric Associa- tion, Philadelphia, Pa., 1959.

Novack, Dennis H., et al., “Changes in Physicians’ At- titudes Toward Telling the Cancer Patient,” Journal of the American Medical Association, 241 :897-929 (March 2) 1979. Letters in response: JAMA, 242:184, 187, 188 (Oct. 26) 1979.

Pelletier, Kenneth, Mind A s Healer, Mind As Slayer, New York: Delta Books, 1977.

Pohl, Richard, “The Will to Live Model of Cancer Care,” Journal of Religion and Health (October) 1980.

Rosenbaum, Ernest and Isadora R., A Comprehensive Guide fo r Cancer Patients and Their Families, Palo Alto, Calif.: Bull Publishing Co., 1980.

Satir, Virginia, Conjoint Family Therapy, Palo Alto, Calif.: Science and Behavior Books, Inc., 1967.

. . . . . . . . . . . . , Peoplemaking, Palo Alto, Calif.: Science and Behavior Books, Inc., 1972.

Verdery, Augustus, “Spiritual Orientation,” an address given at the American Cancer Society, National Con- ference on Human Values and Cancer, 1972.

Wellisch, David K., et al., “Management of Family Emotional Stress: Family Group Therapy in a Private Oncology Practice,” International Journal of Group Psychotherapy, 28:2:225-31, 1978.

VOLUME XXI