Hope: Content

 

Hope

  
 

Instruction Material / Content
Word document
  1. Introduction
  2. Assumptions
  3. Definitions
  4. Delineating hope
    1. Case example: Two-year-old child
  5. The context for hope
  6. The relationship of hope and coping
  7. Hope as a variable characteristic
    1. High hopes and little hope
    2. Realistic hope and false hope
  8. Hope and the illness trajectory
    1. Diagnosis
    2. Remission
    3. Reoccurrence
    4. Far-advanced disease
  9. End-of-life
  10. References

Introduction

Hope is a concept that is both familiar and elusive. While most persons have experienced this concept, detailing precisely what is entailed seems more mystical. At the same time, people have no difficulty asserting when it is present. In this section, a number of approaches to the definition of hope will be reviewed. The message is not that we can cure when we cannot. The message is that help is available. Health professionals have much opportunity to help.

 

Assumptions

  1. Hope has an important role in the daily lives of all human beings.
  2. Facilitating hope for each day is an important contribution to the care of those living with far-advanced disease.

Definitions

Herth defines hope as "an inner power directed toward enrichment of �being�."1 Herth notes furthermore that "Empirical studies have equated hope with the positive expectancy of good in the future."1 Other definitions include the following:

  • a belief that a personal tomorrow exists.2-4
  • a positive expectation that goes beyond visible facts.5-7
  • a motivating force, an inner readiness to reach goals.8,9
  • a feeling that what one desires will happen.10
  • the ground for expecting something/promise.10
  • ambiguous or uncertain anticipation of something desired.11
  • expectation greater than zero of achieving a goal.12
  • an anticipation accompanied by desire and expectation of a positive possible future.13
  • a multi-dimensional, dynamic, empowering state of being that is central to life, related to external help and caring, oriented towards the future and highly personalized to each individual.14

Delineating Hope

Aspects of these definitions encompass an emphasis first and foremost on the future, as well as on positive expectancy, external help, caring and individualization. Hope may pertain to a continuation of good fortune as with acceptance to a college or university and hope for success in the educational sphere, or with a wedding day and hope for continued and future happiness. Hope also relates to circumstances of uncertainty as with the outcome of a scholastic examination or the outcome of a biopsy. In this situation, namely, hope in the context of uncertainty, the hope is for a positive result in the scholastic exam and a negative result for the biopsy. Lastly hope also emerges in the context of bad news such as evidence of metastases or a diagnosis of adult onset diabetes.

In these latter instances, hope is for further treatment or survival until a particular goal is achieved or with diabetes, treatment that does not impede activities of daily living.

Case Example: Two-year-old child
A two-year-old went home after a "trial home" on each of two weekend days. After that trial, the parents felt safe in taking their son home to die. After two months, the child died at home, in between his parents, in their bed.

When the parents took their son home, they had hoped to wheel him around in his red wagon, which they did. They had also hoped to take their son back to the zoo he had enjoyed so much as a two-year-old. They hadn�t been able to take him to the zoo, the parents lamented. While one hope had been realized the other had not, or so the parents thought. The hospice nurse pointed out that when they talked about the zoo with their son, they had in effect "taken the zoo to him." The parents realized they had achieved their hopes in bringing their son home to die.

The Context for Hope

Although uncertainty was mentioned with only one of the sets of examples given, uncertainty is relevant to all of these situations. It is in the context of uncertainty that there is room for hope. More will be said about this later.

Stephenson13 has identified four attributes associated with the concept "hope" namely:

  1. The object of hope is meaningful to the person.
  2. Hope is a process involving thoughts, feelings, behaviors and relationships.
  3. There is an element of anticipation.
  4. There is a positive future orientation, which is grounded in the present and linked with the future (p. 1459).13

And while uncertainty is in the background in this definition, the presence of hope, that positive orientation to the future, suggests the possibility of a positive future outcome.

The Relationship of Hope and Coping

Moving from this more sanguine anticipation of a bright future to one that transpires in the context of illness, illustrates some of the subtleties of the concept. Herth15 examined the relationship between level of hope and level of coping response in 120 adults with cancer. These individuals, 60 of whom had "local" disease and 60 of whom had metastatic disease, were equally divided between three settings notably inpatient, outpatient and home.15 All the patients were receiving chemotherapy.

Herth�s definition of hope for this study identifies another important aspect, the notion that an adverse situation or condition is temporary in nature. Hope was defined for this study as "an energized mental state characterized by an action-oriented, positive expectation that goals and/or needs for self and future are obtainable, and that the present state or situation is temporary."(p.69)15 For this study coping was defined as "a management of specific external/internal demands that are judged as exceeding the resources of the individual through efforts both cognitive and behavioral." (p. 69)15 This definition implies an unusual demand placed on the individual. To conduct the study the author used the Herth Hope Scale and the Jalowiec Coping Scale.

Herth15 found that when the level of hope was high, the level of coping was high and vice versa. Further the strength of religious convictions and performance of family role responsibilities was significantly related to hope and coping. What are the nursing implications of this finding?

  1. Helping patients enhance their coping skills has implications for their approach to the future.
  2. Helping patients tap into their religious resources, as appropriate, and to secure the social resources to maintain their performance of role responsibilities is important to perceptions of coping and hope.

Interestingly, Herth15 found that performance of job role responsibilities was not significantly related to levels of hope or coping. This finding highlights the significance of connectedness with family or significant others and the support of these individuals in times of stress and illness.

Hope As a Variable Characteristic

High Hopes and Little Hope
Thus far, hope has been considered as an important attribute, which has been treated as unambiguously positive. Indeed the song High Hopes by Cahn and Van Heusen contains a refrain about the sky high hopes. In fact, the concept of high hopes usually refers to achievement of some goal; namely, a successful outcome to some venture.

By way of contrast, the term "little hope" is often applied after an airplane crash, or other devastating occurrence such as a mud-slide regarding finding anyone alive.

Realistic Hope and False Hope
Thus one dimension of hope ranges from "little hope" to "hope" to "high hopes." Another dimension of hope is based on the judgement of the likely occurrence of the sought after event. This dimension addresses whether the hope is realistic or on the contrary is false. To suggest that someone has been given false hope is to indicate that a specified outcome is not very likely to occur. Hall16 challenges what she states is a "wide-spread and popular misconception- - -. That is, if a person who has been given a grave diagnosis by a physician professes a will to live and an insistence on living in the present while ignoring the threat of death, that person is somehow not accepting reality" (p.179)16 Hall continues "Whose reality are they talking about? theirs? the patient�s?"16

Corless17 queries: When a 36-year-old woman determines that her way of coping with serious disease is to place it in God�s hands and hope for a miracle, do we label that denial? Or is it one way of coping with the stress of the knowledge of far-advanced disease - an approach based on profound religious beliefs?17

Professionals have problems with each other when the assumption is made that another discipline gave the patient "false hope." It is useful to be cautious under these circumstances and explore with both colleague and patient precisely what was said. Keep in mind that as patients we look for any sign that an outcome will be salubrious. The question, whose life is it anyway, may be paraphrased - whose hope is it anyway?

Hope and the Illness Trajectory

The concept of illness trajectory18 considers the time from diagnosis through the various perturbations of disease progression and remission. Corbin and Strauss describe the different phases of their model as "comeback" from the initial illness, "stable phase," during which the patient�s function is maintained, "unstable phase" in which there is disease recurrence, and "downward trajectory" during which the person�s ability to function is in decline and results ultimately in death.18

Diagnosis
During the initial diagnostic phase, the hope is that a benign or at the least manageable condition will be found. Failing that, the hope is for an indolent illness course in which longevity is minimally affected. Clearly, the hope in the treatment phase is for a permanent cure.

Remission
Remission may occur for a variable period of time from brief to permanent. During this period hope is for complete cure. Engaging in life style changes abets the hope that the condition will not reappear.

Reoccurrence
Reoccurrence of some process is usually a time of distress for patient, family and significant others. The search here is for what else might be done to achieve cure and if not cure, remission. The hope is that some additional therapy will inhibit disease progression. Patient and provider may have different conceptions as to what the therapy can achieve.

Far-Advanced Disease
The approach here will likely include off-label uses of current drugs as well as experimental pre-release drugs, unorthodox therapies, and various non-mainstream treatments. The hope is to find something that works and will reverse or slow down the deterioration of far-advanced disease. Hall16 in her study of 11 men with asymptomatic HIV disease found that possessing hope involved:

  1. Having a future life in spite of diagnosis.
  2. Having a renewed zest for life.
  3. Finding a reason for living, usually one that was not evident before.
  4. Finding a treatment in the professional or alternative care system that one believes will contribute to survival" (p.183).16

 

End-of-Life

Hope during this phase is for good days wherein family and friends can be enjoyed and remaining tasks accomplished. Hope here is for each day. Heath1 in a study of terminally ill people found seven hope fostering and three hope hindering categories. The hope fostering categories are indicated in Table 1. In essence these strategies contain elements of social and spiritual support, personal attributes of hardiness and equanimity, and a goal in life.

Table 1 Key categories of hope-fostering strategies (p. 1254)

Category label

Defining characteristics

Interpersonal/connectedness

Presence of a meaningful shared relationship(s) with another person(s)

Lightheartedness

Feeling of delight, joy or playfulness that is communicated verbally and non-verbally

Personal attributes

Attributes of determination, courage and serenity

Attainable aims

Directing efforts at some purpose

Spiritual base

Presence of active spiritual beliefs and practices

Uplifting memories

Recalling positive moments/times

Affirmation of worth

Having one's individuality accepted, honored and acknowledged

The hope hindering categories are depicted in Table 2. These strategies address physical, psychological and existential distress.

Table 2 Key categories of hope-hindering strategies1

Category label

Defining characteristics

Abandonment and isolation

Physical and/or emotional loss of significant others

Uncontrollable pain and discomfort

Continuance of overwhelming pain or discomfort despite repeated attempts to control

Devaluation of personhood

Being treated as a nonperson of little value

Reprinted from Heath, K. Fostering hope in terminally-ill people. Journal of Advanced Nursing 15 (1990): 1250-1259. Permission: Journal of Advanced Nursing.

It becomes apparent how the caring or careless professional either reinforces or not the hopeless condition. Hall16 comments on hope from personal experience.

I wrote this paper to encourage others to think about living and dying from the lived experience of the person who has a terminal diagnosis, so that some of the theories and approaches that have been so destructive to the emotional well-being of patients will be revised before professionals continue to use them. Participants gave many examples of actions of nurses and other professional care-takers that eroded hope and increased fear. Sadly, many of those whose job it is to care and to promote health and healing have taken their cues for professional intervention from attitudes of society that dichotomize life and death. Death, for them, is a failure in the established curative health-care system, as well. Hope is deemed a form of denial or false reality instead of a universal need of humans, when it is held by persons whom medicine has decreed shall die.

I have concluded from my research, from my personal experience, and from observations on people in the last stages of dying that it is just as important to have hope in the hour before one�s death as it is to have hope in the other stages of one�s life. No one can predict whether he or she will be alive a month from now, but we go around acting as though we can. We do this, not as a form of denial of death, but because this is what it means to be human.16

From Hall, B. A. (1990). The struggle of the diagnosed terminally ill person to maintain hope. Nursing Science Quarterly, 3(4), 177-184. Permission: Nursing Science Quarterly.

 

References

  1. Herth, K. (1990). Fostering hope in terminally-ill people. Journal of Advanced Nursing, 15(11), 1250-1259.
  2. Hinds, P. S. (1984). Inducing a definition of 'hope' through the use of grounded theory methodology. Journal of Advanced Nursing, 9(4), 357-362.
  3. Hinds, P. S. (1988). Adolescent hopefulness in illness and health. Advances in Nursing Science, 10(3), 79-88.
  4. Stanley, A. T. (1978). The lived experience of hope: the isolation of discreet descriptive elements common to experiences of hope in young adults. Dissertation Abstacts Interenational, 39((University Microfilm No. 7819899)), 1212B.
  5. Du Fault, K. (1981). Hope of elderly patients with cancer. Unpublished Doctoral dissertation, Case Western Research University.
  6. Haberland, H. (1972). Psychological dimensions of hope in the aged. Relationship to adaptation, survival, and institutionalization. Unpublished Unpublished doctoral dissertation, University of Chicago, Illinois, Chicago, IL.
  7. Fitzgerald, R. (1971). The sources of Hope. Rushcutters Bax, Australia: Pergamon.
  8. Owen, D. C. (1989). Nurses' perspectives on the meaning of hope in patients with cancer: a qualitative study. Oncol Nurs Forum, 16(1), 75-79.
  9. Potish, J., & Axen, D. (1984). Music for the dying: a personal acount of the new field of music-thanatology--history, theories and clinical narratives. Journal of Holistic Nursing, 12(1), 83-89.
  10. Barnhart, C. L., & Barnhart, R. K. (Eds.). (1994). The World Book dictionary. Chicago, IL: World Book.
  11. Green, M. R. (1977). Anticipation, hope and despair. Journal of the American Academy of Psychoanalysis, 5(2), 215-232.
  12. Stotland, E. (1969). The psycholgy of hope. San Fransisco: Jossey-Bass.
  13. Stephenson, C. (1991). The concept of hope revisited for nursing. Journal of Advanced Nursing, 16(12), 1456-1461.
  14. Cutliffe, J. R. (1998). Hope, counseling and complicated bereavement reactions. Journal of Advanced Nursing, 28(4), 754-761.
  15. Herth, K. (1989). The relationship between level of hope and level of copoing response and other variables in patients with cancer. Oncology Nursing Forum, 16(1), 67-72.
  16. Hall, B. A. (1990). The struggle of the diagnosed terminally ill person to maintain hope. Nursing Science Quarterly, 3(4), 177-184.
  17. Corless, I. B. (1992). Hospice and hope: An incompatible duo. The American Association of Hospice and Palliative Care, 9(3), 10-12.
  18. Corbin, J. M., & Strauss, A. (1991). A nursing model for chronic illness management based upon the Trajectory Framework. Scholarly Inquiry Nursing Practice, 5(3), 155-174.

 

©2001 D.J. Wilkie & TNEEL Investigators