Visions of Hope: A Changing Mosaic
Elizabeth J. Clark, Ph.D., M.S.W., Director of the Department of Social Work at Albany Medical Center, Summer 1999
Hope is a complex and often misunderstood concept. It has been defined as the interaction of wishes and expectations and as a resource that is a psychological asset. At the physiological level, hope is associated with improved functioning of the immune system. Hope's purpose is to guard against despair. As a coping strategy, it can reduce ongoing stress and discomfort quickly and for prolonged periods of time.
Hope has a temporal aspect and involves a consideration of the future. It means that we have confidence in the desirability of survival, and in our ability to exert a degree of influence on the world surrounding us.
As a coping characteristic, hope is individualistic. People have various capacities for hoping and different approaches to maintaining hope. Similarly, individual hope may be influenced by the hope structure of the family. Families usually have well?established hope constellations. These hope structures may be spiritual or pragmatic.
Hope is a phenomenologically positive state. By definition, hope can never be false. To the individual, hope is something she or he can feel and think and talk about.
Something new to hope for
Hope is not a static concept. It changes as situations and circumstances change. To describe this shift of hope and expectation, one observer coined the phrase, the "changing mosaic of hope." For example, when a cancer diagnosis is first determined, the individual always hopes for a complete cure. If this is not possible, that hope may be transformed into hope for the control of the disease or for extended periods between recurrences. Even when the hope for survival is dim, individuals will find other things to hope for -- living to see a grandchild born, control of pain, or even a dignified death.
Hope continues, but day by day, and week by week, the mosaic of hope changes as reality changes. Whatever the reality, it is important to recognize and acknowledge that there is always something to hope for.
When hopes are not realized "broken hope" may occur. Broken hope requires an adjustment of thinking if the individual is to regain a balance of hope after a set-back or major disappointment. Disconfirmation of one's hope usually leads to a reformulation of hope, not to its destruction. The individual may choose to build a new hope or create a substitute hope.
Hope and denial
A well?functioning hope does repress doubts and fears, but hope does not equate with denial. True hope is always based in reality. One scholar notes that the main difference between hope and denial (self-delusion) is that hope transcends reality while denial avoids it.
Cancer survivors need and desire accurate and honest information about their illness and prognosis. If presented with compassion and with assurance for continuing support, even bad news can be accepted, and new, more realistic goals can be assimilated into the hoping process.
Hopelessness
Hopelessness suggests the absence of all hope. An acute loss of hope is very serious because a hopeless person is a helpless person. A hope?lost person appears to be totally separated from, and indifferent to, both the internal and external environment. Foreshortened life does not in itself create hopelessness; in fact, hope has a way of outlasting the facts of the illness. Above all, hope should never be utterly destroyed -- think of the overwhelming impact of the words, "It's hopeless," or "There's no more hope."
In his book, The Cancer Conqueror (1988), Greg Anderson asserts: "Hope and hopelessness are both choices, so why not choose hope"? Choosing hope is not always easy, and at times of crises, cancer survivors may need additional support and encouragement from the health-care team. This is not the time for false reassurances, but it does require helping the individual to evaluate realistically the situation and to refocus hope.
Hope and confidentiality
An individual's hope for the future is intensely personal and unique. For many persons faced with serious illness, a sense of future outlook that is positive and productive can be hard to maintain. Sharing hope is seen as a sign of confidence and close human relationship, and it implies great trust in the other person's understanding and thoughtfulness. It also deserves the same level of confidentiality as other therapeutic issues. It is extremely important not to be biased against hoping in general and not to favor solutions simply because they are reality-based.
Maintaining a professional hope
Sometimes, caregivers find it difficult to maintain professional hope. When we find our own vision of hope slipping, we need to reevaluate our measures of success. This may require moving beyond disease outcome measures to focus more on quality of life.
Helping a patient meet a goal -- returning to work, attending a child's wedding -- should be hope?reinforcing for the professional. Take note of and comfort from these events, and use them to rediscover your vast capacity for professional and personal hope.
Community of hope
Perhaps the most important things we can do in our treatment centers is to provide a "community of hope" for our patients. In our oncology center, many of our staff wear buttons that say, "I belong to a community of hope." This gives the message that they are hopeful about cancer survivorship and hopeful for the individual patients treated there. This is not a closed community, but one which all patients and their family members are welcome to join. A community of hope fosters trust and openness and team work. It provides support and continuity of care. It allows for individual differences in coping with cancer and accepts all visions of hope that patients and their family members bring to the treatment process. In a community of hope, success is measured not just by disease outcome, but also by enhanced quality of life, by psychosocial successes, and by hopes realized.
Hope must be a permanent component of any cancer treatment center. No matter what the stage of disease, every patient has the right to be hopeful, and every healthcare professional has an obligation to support their patients in their visions of hope.
Editor's Note: This article originally appeared in the Breast Center Bulletin and the NCCS Networker (Spring 1993) and is reprinted by permission of the National Coalition for Cancer Survivorship.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.