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This article explores the concept of hope and its importance in the lives of individuals with advanced disease. It delves into definitions of hope, the relationship between hope and coping, and the impact of hope on the illness trajectory.
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Introduction • Hope is a concept that is both familiar and elusive. • People have no difficulty asserting when it is present.
Assumptions • Hope has an important role in the daily lives of all human beings. • Facilitating hope for each day is an important contribution to the care of those living with far-advanced disease.
Definitions • Hope • “An inner power directed toward enrichment of ‘being’.” • “Empirical studies have equated hope with the positive expectancy of good in the future.” • Other definitions include the following: • A belief that a personal tomorrow exists. • A positive expectation that goes beyond visible facts. • A feeling that what one desires will happen. • Ambiguous or uncertain anticipation of something desired. • 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. (Herth, 1990)
Delineating Hope • Aspects of these definitions encompass an emphasis: • First and foremost on the future; also emphasis on positive, expectancy, external help, caring and individualization. • Hope may pertain to a continuation of good fortune • Example: Acceptance to a college or university and hope for success in the educational sphere • Hope also relates to circumstances of uncertainty • Example: The outcome of a scholastic examination. • Lastly, hope also emerges in the context of bad news • Evidence of metastases or a diagnosis of adult onset diabetes
Case Example: 2-year-old child • Story of two-year-old who goes 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 parentson their bed. • When the parents took their son home, the child hoped they would wheel him around in his red wagon, which they did. • They also hoped to take their son back to the zoo. • The parents lamented that they hadn’t been able to take him to the zoo. • The hospice nurse pointed out that when they talked about the zoo with their son, they had in effect, “taken the zoo to him.” • Conclusion • The parents had achieved what they hoped for when they brought their son home to die.
The Context For Hope • In the context of uncertainty, there is room for hope. • Stephenson identified four attributes associated with the concept “hope” • “The object of hope is meaningful to the person.” • “Hope is a process involving thought, feelings, behaviors, and relationships.” • “There is an element of anticipation.” • “There is a positive future orientation ...” • 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. (Stephenson, 1991)
Relationship of Hope & Coping • Herth examined the relationship between level of hope and level of coping response in 120 adults with cancer. • Herth’s definition of hope • “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.” • Herth’s definition of coping • “A management of specific external/internal demands that are judged as exceeding the resources of the individual through efforts both cognitive and behavioral.” (Herth, 1989)
False Hope • 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. • To suggest that someone has been given false hope is to indicate that a specified outcome is not very likely to occur.
Hope and the Illness Trajectory • The concept of illness trajectory • Considers the time from diagnosis through the various perturbations of disease progression and remission. • Corbin and Strauss’ different phases: • “Comeback” from the initial illness. • “Stable phase” (during which the patient’s function is maintained). • “Unstable phase” (during which there is disease recurrence). • “Downward trajectory” (during which the person’s ability to function is in decline and results ultimately in death). (Corbin and Strauss, 1991)
Diagnosis & Treatment • 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 lifestyle 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 will likely include: • Off-label uses of current drugs • 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.
Far-advanced HIV Disease • Hall in her study of 11 men with asymptomatic HIV disease found that possessing hope involved: • “Having a future life in spite of diagnosis.” • “Having a renewed zest for life.” • “Finding a reason for living, usually one that was not evident before.” • “Finding a treatment in the professional or alternative care system that one believes will contribute to survival.” (Hall, 1990)
End-of-Life I • 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.
End-of-Life II: Hope-fostering Categories • Herth in a study of terminally ill people found seven hope-fostering categories: (Herth, 1990)
End-of-Life III:Hope-hindering Categories • Herth in a study of terminally ill people found three hope-hindering categories: (Herth, 1990)
End-of-Life IV • These strategies address physical, psychological and existential distress. • It becomes apparent how the caring or careless professional either reinforces or not the hopeless condition. • Hall comments on hope from personal experience. • “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 healthcare system ... Hope is deemed a form of denial or false reality instead of a universal need of humans ...” • “I have concluded … 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.”
