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Every Tomorrow, a Visionof HopeMary L. Nowotny PhD, RN aa Associate Dean of Academic Affairs, BaylorUniversity School of Nursing, Dallas, TX,75246Published online: 18 Oct 2008.

To cite this article: Mary L. Nowotny PhD, RN (1991) Every Tomorrow, aVision of Hope, Journal of Psychosocial Oncology, 9:3, 117-126, DOI: 10.1300/J077v09n03_10

To link to this article: http://dx.doi.org/10.1300/J077v09n03_10

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Every Tomorrow, a Vision of Hope Mary L. Nowotny, PhD, RN

ABSTRACT. Although hope has been idcntified as an important faclor in the care of cancer patients and their families, i t is not for- mnlly assessed in patients' records. This article explains how the Nowotny Hope Scale NHS) can be used to assess patients' hope. The subscales o f the N 1 IS provide a framework for the development and implementation of strategies to maintain, reinforce, and facili- .

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tate hope. Sources of hope as well as conflicts between the hopes of health care providers and cancer survivors are also discussed.

Hope has been defined as an expectation, an illusion, a virtue, an emo- tion, and a goal (Stanlcy, 1978; Stotland, 1969), but it is more. Hope is multidimensional, implying a desire for, as well as trust in, future events (Dufault, 1981; Hinds, 1984; Lynch, 1974). Just as the present plays a powerful role in determining our future, so does hope for the future deter- mine our course of action in the present. The concept of hope is not new; neither is its importance in the care of cancer patients and their families. Hope is often associated with carrying the broken weapons of death- hence the American Cancer Society symbol, the Sword of Hope.

Vaillot (1970, p. 272) said that hope goes beyond the individual: "I am the one who hopes, but I hope in someone or some One." She also said that nurses cannot inspire hope in others i f they themselves do not have it. Their own hopc is part of their caring. A nurse "inspires hope by what she is more than what she does" (p. 273). Lynch (1974) stated that hope involves a person in a relationship with another. Karl Menninger (1959) pointed out that hope is a part of being human.

Dr. Nowotny is Associate Dean of Academic Affairs. Baylor University School of Nursing, 3700 Worth Street, Dallas, TX 75246. An earlier version of the arlicle was presenkd during "Supportive Care '90," the ninth annual confer- ence on psychosocial oncology sponsored by The Don and Sybil.Harrington Can- cer Cenler, Amarillo, TX, in April 1990.

Journal of Psychosocial Oncology, Vol. 9(3) 1991 O 1991 by The Haworth Press, Inc. All rights resewed. 117

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118 JOURNAL OF PSYCHOSOCIAL ONCOLOGY

Hope is essential if people are to cope successfully with and adapt to situations they encounter throughout life. Without hope, the events of today become meaningless. Without hope, patients and their families can- not cope with the crisis of illness. Moreover, hope is always changing. As people face new situations or stressful events, their goals and expectations change. If they see that options are available, their hope increases (Veninga, 1985).

COMPONENTS OF HOPE

Several studies have been done in nursing and other disciplines to iden- tify the components of hope. These components have been identified as a sense of the possible (Lynch. 1974), goal directedness (Stoner & Kemp- fer, 1985; Stotland, 1969), purpose and meaning, (Frankl, 1984; I-lickcy, 1986), spiritual aspects (Dufault, 1981; Raleigh, 1980; Stanley, 1978), and involvement with others (Dufault, 1981; Lynch, 1974; Stanley, 1978; Vaillot, 1970). In a recent study of 306 adult cancer patients and well individuals, Nowotny (1989) identified six components of hope:

1 . Cotfldence in the outcome. The person is confident that his or her hope will be fulfilled and the outcome will have meaning and rele- vance. When the outcome of hope is unimportant to a person, the person tends to become passive and to refrain from active involve- ment.

2. Relationships with orhers. This component of hopc includes thoughts, feelings, and actions that involve other people. Travelbee (1971) related hope to a person's expectation of help from others, especially when the person's own inner resources are insufficient.

3. Belief in the possibility of a firure. A desire for change in one's present status is indicated. The person has a goal or expectation that has not yet been met.

4. Spirirunl beliefs. Fromm (1968) stressed that hope exists only if i t is foundcd in faith, and Stanley (1978) defined hopc as being possible through religious faith. If God has reality for a person, then that person needs to hope in God. This hope in God surpasses all transi- tory aspirations.

5. Active involvemenr. This involvement can be simply setling a goal, caring, praying, planning, or mobilizing the energy to initiate a plan. The person does not, however, just sil and wait for an event to occur.

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Supportive Care '90 119

6. h e r rccrdir~ess. Hope comes from within. I t is related to trust and the courage to persevere.

Using these components, hope can be defined as a six-dimensional, dynamic attribute. I t is activated when people are confronted with a stress- ful stimulus itnd feel that they have some control over their environment. The outcome of hope is the formation of a new goal, a new strategy, or a feeling of safety or comfort (Nowotny, 1989).

ASSESSMENT OF HOPE

Hope is not formally assessed in patients' records, but it should be. For cancer patients, hope is a true vital sign, and i t has implications regarding the care of the patient and the family. How is hope usually assessed? Health care providers observe their patients for .signs of hopelessness: withdrawal, despondency', feelings of incompetence or discomfort, changes in interactions with others, or a feeling of being overwhelmed. These arc not clear measures of hopelessness and do not provide direc- tions for intervenlion. I n recent years, several hope scales have been de- veloped that can be used as the primary assessment tool or as a method of validating these observations. Some of these scales have been developed from a nursing perspective (I.lerth, 1989; Miller & Powers, 1988; No- wotny, 1989; Stoner & Kempfer, 1985); others have been developed from psychological and psychiatric perspectives (Beck et at., 1974; Gottschalk, 1974; Obayuwana et al., 1982).

The Nowotny Hope Scale (NHS) (Nowotny, 1989) is a 29-item ques- tionnaire that assesses the six components of hope described earlier. Be- cause each component is a subscale of the NHS, subscale scores as well as a total score can be obtained. The queslionnaire takes less than 10 minutes to complete. The questions and answers can be given verbally, or the patient can use a pencil to check his or her responses to the questionnaire on a four-point scale (strongly agree, agree, disagree, and strongly dis- agree). Both positive and negative questions are included. Using Cron- bach's alpha, the reliability of the NI-IS was found to be .90; the construct validity was established by principal components analysis.

The hope assessment should be done during the initial contact with each patient. The results should then be incorporated into the overall plan of care. Because hope is always changing, ongoing assessments are indi- cated.

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JOURNAL OF PSYCHOSOCIAL ONCOLOGY

STRATEGIES TO FACILITATE HOPE

Use of the NHS to assess a patient's hope provides a framework for determining the most appropriate interventions. If a patient scores low on several subscales. interventions can easily be im~lemented lo h e l ~ the patient in those areas. I f a patient scores high on a 'subscale, this aria can be reinforced and used as a source of strength. The subscales, together with observations of the patient, permits one to formulate strategies that will facilitate hope.

Confidence in he outcome. Low scores in this area correlate with pa- tients' lack of confidence in their own strength or capacity to achieve their goals. These patients either lack or fail to use their past satisfactions and successes. The following are appropriate interventions:

Work with the patient to maintain his or her confidence. Encourage family members and friends to provide support. Listen to the patient. Identify the patient,^ strengths. Stay with the patient.

Relationships with others. Patients with low scores on this subscale are discouraged with themselves and others. They do not believe that others will be there for them in times of distress or that, i f others do try to help, their efforts will be futile. The following are appropriate interventions in this area:

Assess who is most significant to the patient, then talk with the patient about the person (or persons). Involve the patient's family; i f the family feels hopeful, informed, and confident of outcomes, these feeling can be readily conveyed to the patient.

Q Help the patient reach out to others for support. Assess the patient's support systems to determine the strengths and weaknesses of his or her relationships with family and friends. Encourage the family and friends to visit the patient. Be available to the patient. Be a patient advocate. Encourage the family to allow the patient to make decisions. Use touch when appropriate. Tell the patient about the local chapter of the American Cancer Soci- ety and other community resources and support groups.

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Suppofiive Care '90 121

The possibility of af i rure. Patients who score low in this area are usu- ally oriented to the present, not the future. They are overwhelmed by stresses and have difficulty thinking about anything beyond the present. If patients feel they have some control, they will perceive events as being less stressful and will believe that positive changes are possible. The fol- lowing are appropriate interventions:

Help the patient to make plans and to be creative in doing so. I-iclp the patient look forward to worthwhile goals. Give the patient as much control as possible over his or her situation. Be flexible regarding hospital procedures to help meet the patient's needs.

Spirirunl beliefi. Patients who score low in this area show a lack of faith. The following are appropriate interventions:

Assess the importance to the patient of faith, prayer, religious prac- tices, and a relationshi with God or another highcr being. Create an environmcn P in which the patient feels comfortable cx- pressing spiritual beliefs. Help the patient renew his or her spiritual self. Assess whether the paticnt needs a visit from a member of the clergy.

Active involvemenl. Patients who score low in this area are usually pas- sive and exhibit reduced activity. They may lack ambition or interest and show a loss of gratification from their roles and relationships. The follow- ing are appropriate interventions:

Help thc paticnt devise and revise goals. Help the patient set short-term, easily achievable goals; this will encourage the revision of other goals. Encourage the patient to discuss his or her hopes. Inform the patient and family about treatment plans. Encouragc the patient to ask questions and to discuss plans and op- tions with the physician. Encouragc the paticnt to participate in decision making. Help thc paticnt to be independent in as many activities as possible. Encourage laughter and humor. Offer the patient choices.

Inner rendiness. Patients may exhibit pessimism and lack of motivation

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122 JOURNAL OF PSYCHOSOCIAL ONCOLOGY

and be discouraged about themselves. The following are appropriate inter- ventions in this area:

Help the patient to identify and use existing strengths. Listen to and stay with the patient. Help the patient to recognize and discuss his or her feelings. Encourage the patient to keep a diary of feelings and experiences. Encourage family members and significant others to support the pa- tient.

Health care professionals need to work closely with their patients to assess the dimensions of hope, reinforce the areas that have weakened, and find new resources. Hope i s the vital link to living with cancer. Thus, using an instrument that has established reliability and validity to measure hope will give health professionals more accurate assessment data than could.otherwise be obtained. Strategies to facilitate, reinforce, and main- tain hope can be developed from this data.

SOURCES OF HOPE

In a study by Duhult (1984), subjects reported that the sources of their hope included the behaviors of -others, spiritual factors, positive experi- ences in the past, the meaning of suffering, evidence of their personal well-being, and a sense of their own worth. For example, hope may de- pend on communication with others. Friends and family can be sources of hope by emphasizing that those at home are waiting for the patient to return. Even i f the patient will not be able to resume previous activilics, there is st i l l hope that the family can have an enriched life together.

A health professional's words can open or close doors. The right words can maximize the patient's hope, provide a supportive environment, and open the way to recovery. The wrong words or words said at the wrong time can make a patient dependent, fearful, or resistant and can compli- cate the healing environment, Northouse and Northouse (1987) found that communicating hope is a common problem for health professionals. More studies are needed to determine the most effective ways of communicating hope to patients.

Health care providers are sources of hope when they help patients achieve specific goals. Dufault (1984) reported that the specific objects of hope that nurses most often helped patients to achieve were management and relief of symptoms, independent functioning, help with the activitics of daily living, more effective coping mechanisms, maintenance and pro-

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Suppotlive Care PO 123

motion of relationships with family and friends, and confidence in them- selves as intelligent, contributing individuals.

In his work with cancer patients, Siegel(1986) found that four kinds of faith are crucial to recovering from a serious illness: faith in oneself, one's doctor, one's trealment, and one's spiritual beliefs. Faith as a source of hope may rest on complete confidence in the health care system. Religious faith can provide a meaning for suffering that transcends human explana- tions.

Patients who are "fighters," who ask a lot of questions and express their emotions freely, are often labeled difficult or uncooperative. How- ever, these patients refuse to be victims. They educate themselves about their disease and question their physicians because they want to under- stand their treatment and participate in it. Understanding their treatment can free patients from anxiety and fear and give them a sense of control. This, in turn, reinforces the inner resources that are sources of their hope.

Denial can also make room for hope, or at least provide a positive outlook. Some patients who use denial see the machine they are attached to as helping them to get well, not as a sign that their condition is deterio- rating. Denying the worst and hoping for the best may be healthy even when unrealistic.

A patient's hope will fluctuate, depending on his or her perception of progress. The patient-health professional relationship is geared to the gen- eration of hope. However, caregivers must also be aware of the limits on their own ability to give hope and to heal. The patient expects something from caregivers-a pill, a touch, or a word of hope. Health care providers need to be certain that their negative beliefs, fears, and prejudices do not become threats to hope. No matter what the statistics may say about a patient's chance of survival, that patient must be given the chance to be the exception. Responding quickly to a patient's requests maintains his or her hopes, sense of control, and dignity.

PATIENTS' VERSUS PROVIDERS' HOPES

People develop hope through seeking help from and trusting others. Consequently, the hopes of both patients and health care providers must be considered.

Numerous factors threaten a patient's hopes: the behavior of others; the negative cffects of therapies, tests, and the hospital environment; a sense of being a burden to and imposing on others; lack of information; and evidence of diminishing health. I-lealth care providers, including nurses, are among those whose behavior can dash a patient's hopes. For example,

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take a patient who hopes for the management of pain or nausea. When a nurse delays in responding to the patient's request for medication, the patient's hopes are weakened.

Health care providers sometimes make statements such as "This is a hopeless case" or "Any hope would be false hope." A patient may say, "This treatment was my only hope and it failed." Some patients conclude that there is no hope when families and friends visit less often or avoid answering questions. In her book on children who survived cancer, Erma Bombeck (1989) quoted a teenager who said: "It's like people whisper around you and they never laugh. Man, without a sense of humor, I wouldn't have made it this far" (p. xviii).

When health care providers must communicate test results indicating a poor prognosis or a poor response to treatment, they risk dashing a pa- tient's hope. However, it may be possible to communicate negative infor- mation in such a way that the patient will receive it as a challenge rather than as a death sentence. For example, when presenting statistics, a care- giver can emphasize their positive rather than negative aspects. Patients can be devastated if told that three out of seven people with their disease live no longer than a few months, whereas hearing that four out of seven patients survive can be motivating.

Realistic hope can be defined as hope that corresponds to the patient's actual circumstances. Although hope for a cure may not be realistic, health care providers can help their patients see that they have much to hope for-seeing a loved one again, celebrating a grandchild's birthday, or being relieved of pain. Caregivers need to take their cues from the patients and to let these cues define their patients' hopes.

Caregivers should never say, "There is nothing more I can do for you." There is always something more that can be done, whether it is listening to or sitting with the patient or praying with the patient and fam- ily. One patient with metastatic cancer of the liver talked about the cruise she wanted to take to Alaska. Thinking about and planning for the trip sustained her through chemotherapy. Then, as the disease progressed, she stopped talking about visiting Alaska and instead talked about hoping to sit in her garden and watch the birds again. When the staff talked with her about the birds that came to her garden, she described their colors, their characteristics, and their songs.

Realistic hope is not necessarily practical. If a terminally ill patient wants to purchase tickets for a concert to be held six months later and spending the money will not deprive the family of basic necessities, care- givers should not discourage the patient. The joy of anticipating the con- cert may well be worth the money.

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I f a patient talks about hopes that seem entirely out of range, health professionals can simply listen lo the patient discuss feelings about those hopes. They also may be able to provide more information or bring in someone who has more knowledge about the subject at hand. When the woman who originally hoped to visit Alaska was able to go home again, health professionals were able to help her return home by having oxygen there and arranging for someone to be with her a l l day. Once home, she began talking about going back to work. Knowing that her work had been her life, her colleagues did not discourage her. Instead, they brought some of her work to her, even though she did l i t t le more than look at it. But each day she said, "Maybe I'll feel stronger tomorrow and I'll go in [to the office] for a little while." Whenever a patient or family expresses an important'hope, the hope should be given a try.

Helping a patient fulfill rn important hope sometimes becomes a monu- mental task involving various members of the health team, such as respi- ratory therapists, physical therapists, or pharmacists. Further, when a pa- tient's hope seems false or unrealistic, the health care professional's perceptions often must be changed. What the professional deems realistic may be more restrictive than the situation warrants. Health professionals tend to define reality in terms of medical probabilities, but, in fact, many patients mobilize resources that allow them to far exceed those probabili- ties.

Cancer patients can have positive expectations for the future, even though that future may hold many uncertainties. Although one cannot predict the outcome of cancer, there is always room for hope. According to the American Cancer Society, more than six million Americans have survived cancer (Cancer Facts and Figures, 1990). Most of these people have developed strategies to cope with their cancer and to set new goals and are living active, productive lives. Consequently, newly diagnosed cancer patients have every reason to hope. Hope is always there for the taking-a vision of tomorrow. ,

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