Elsevier

Social Science & Medicine

Volume 59, Issue 6, September 2004, Pages 1329-1337
Social Science & Medicine

While there's life …: hope and the experience of cancer

https://doi.org/10.1016/j.socscimed.2004.01.014Get rights and content

Abstract

Hope is the subjective probability of a good outcome for ourselves or someone close to us. During mortal extreme experience, observers and participants in the experience hope for life over death. In cancer, the illness/treatment experience is similar to the experience of dying, but with the redeeming element of hope for cure, for life over death. If cure is not obtained, hope for the participant moves to a ‘good death’.

If the outcome is cure, however, the hope for life has been realised for both participant and observer. Hope, which is always for the future, may now diverge between participant and observer. Observers hope for a return to normality, and use a discourse of normality which emphasises such things as ‘getting over it’, ‘moving on’ and ‘getting back to normal’.

Survivors may not find the realisation of hope for life to be as comfortable as might be expected. After the euphoria of being declared free of disease, about 30% of survivors develop post-cancer distress with death salience. They recognise, whether they want to or not, that they have confronted their own annihilation, and that they will at some stage have to do so again. We all know that we will die, but there is a greater vividness and proximity in that knowledge for someone who has been through mortal extreme experience.

Death salience provokes a confrontation with meaning in a person's life. Thus survivors turn inward to their deep selves in order to establish an understanding of what their life projects might become. Observers, on the other hand, find death salience hard to live with, and may turn away from the distressed survivor.

The hopes and discourses of survivors and those close to them may have different structures and different objects. These differences may help to explain the frequency with which stress and disruption affect close relationships after cancer and other life-threatening experiences.

Introduction

Hope is a word much used. Its meaning is assumed to be clear. There are, however, evident ambiguities. Hope can be seen as ‘a support or as a source of disruption in the care of the cancer patient’ (Bresnahan & Merrill 1999, p. 43). It becomes a ‘disruption’ when it is ‘false hope’. There are other ambiguities of meaning. It is an abstraction, with usages that refer to everything from high degree of certainty about an outcome (Nuland, 1997, p. 222) to confidence in the meaning of a life (Nuland, 1997, p. 242). That sense in which meaning sustains a sense of hope is found in Agich's account as well ‘… hope refers to the prospect of meaningful experience with others at those times when one most needs comfort and companionship’ (Agich, 1993, p. 113).

Lupton also describes a ‘discourse of hope’ directed particularly at cancer. She writes ‘To despair, to lose hope, are frowned upon as strategies of dealing with diseases such as cancer. People with cancer are lauded if they appear to be brave, never allowing themselves to “give in” to the disease. There is an emphasis on “will” which argues that “if one has enough hope, one may will a change in the course of the disease in the body”…’ (Lupton, 1994, p. 67).

Hope can more broadly be defined as a subjective probability of a good outcome. Probability is used in a technical sense, to mean the full range from the ‘possible’ to the ‘very likely’. Subjective probability is a mental state ‘in which the probability of an event, as judged by any given individual, is a statement of that person's degree of belief in the occurrence of that event’ (Heap, Hollis, Lyons, Sugden, & Weale, 1994, p. 46). Hope, therefore, is a kind of belief state. The belief is in the level of probability of good outcome. ‘Good’ refers to a subjective judgement of benefit for oneself, a loved other or others in a context and at a particular time, and hope can thus also be regarded as an emotion (Nussbaum, 2001). The judgement of what is good may vary during the course of an experience. We will say more about this in the context of illness. Hope is narratively constructed (Mattingly, 1998, p. 70) and future oriented (Mattingly, 1998, p. 73).

Certainty is not an object of hope. Hope implies a degree of uncertainty. Thus, someone who ‘knows’ that he or she will be cured of cancer is not hopeful of cure, but certain of it. Others observing the person with cancer may have various levels of hope about cure, but be far from certain. Therefore, levels of hope may vary widely within a community of people involved in the extreme experience of one or more members of the community. Hope is a continuum, not dichotomous. When we talk about not giving up hope we are talking about maintaining (or raising) a level of subjective probability, rather than shifting it downward.

Hope exists in social contexts. Hope is comforting. In the context of extreme experience, there is a subject who feels a particular level of hope, and observers whose hope levels may differ. Differences in level of hope can cause interpersonal judgements to be made and communications to become strained. Observers may make the kinds of negative judgements of ill people that Lupton refers to if ill people ‘despair’ or ‘lose hope’.

Hope is ‘unrealistic’ when someone enters a particular state of belief that clashes with the subjective probabilities of others. When there is a conflict between beliefs, there may be no resolution because beliefs are at stake. ‘True’ belief can only be confirmed by outcome and in retrospect. Hope is—technically—always irrealis in the linguistic sense of something which is non-actual or non-factual.

Section snippets

Sources of data

The methodology used in this paper is similar to that reported earlier by the authors (Little & Sayers, 2003).

We have derived the data for this paper from four main sources:

  • 1.

    Extended narrative interviews with 15 survivors of large bowl, liver and breast cancer, Hodgkins lymphoma and leukaemia. The methodology of these interviews and their analysis has been published elsewhere (Little, Jordens, Paul, Montgomery, & Philipson, 1998; Little et al. (1999), Little et al. (2000); Little et al. (2001),

Extreme experience

There is inevitably a difference between those who observe and those who participate in mortal extreme experience, the experience which threatens life. Participants are aware that their lives are actually at risk. Observers know that a life is at risk, but not their life. Nevertheless, observing the suffering of another is disturbing. Terror Management Theory concludes that observers are made mortality salient—that is, uncomfortably aware of mortality as the common and inevitable fate of

Death salience

Death salience is the reflective awareness in a survivor that a mortal extreme experience could have led the subject down a fork in the road of serious illness to death and personal extinction (Little & Sayers, 2003). It is an inability to deny the reality of personal death by a person who has life. It is also a confrontation with meaning in a life, a recognition that ‘Any meaning … is better than none’ (Broyard, 1992, p. 65). It implicitly raises the reality that the whole process will have to

The objects and discourses of hope

Hope changes its object during the course of mortal extreme experience. In cancer illness, for example, the phase of mortal extremity salience is characterised by the hope that life will continue. If the course moves into that of terminal illness, hope moves its object to ‘good death’, which usually includes hope for the formulation of meaning for the life that is ending. Broyard, dying of prostate cancer, pleads for understanding that might give a context and meaning to his dying:

What a

Observer–participant relationships

Observers find it hard to understand when the object of hope for a survivor changes from life to meaning. During the illness, participant and observers are united by the hope they have for achieving life and avoiding death. Family members may become aware of death for the first time, as Reynard records

But ah, in my case, it has been a treble whammy if you like, I mean, my, my family have, have been knocked for six, because of it. Because you know I was always out there and backing them up and

Death salience and the deep self

Death salience breaches the barrier that normally exists between the social self and the deep self, forcing an unaccustomed encounter with the realities of the deep self (Little & Sayers, in press). Handler describes the experience of seeing into the depths of the self:

… I’m always aware of a little doorway that exists down near the floor of my consciousness … when I do open the door and bend down to its level, I feel like Alice after she passed through the looking glass … It's the land I

Discrepancy theory and well-being

During the process of uncovering the deep self, however, a survivor may become aware of discrepancies and tensions between her models of the person she wants to become (ideal self), the person she feels she ought to become (ought self), and the person she actually is (actual self). These discrepancies are the basis of Discrepancy Theory (Higgins, Bond, Klein, & Strauman, 1986; Higgins, 1987). The experience of discrepancies between ideal, ought and actual selves may cause a drastic loss of the

The varied discourses of hope

We can now see that the emotion of hope, for both participants and observers, focuses on different objectives, and is expressed in different discourses, as the course of a mortal extreme experience unfolds. The illness phase, for both groups, is dominated by a discourse of hope for life over death, because all those involved in the experience want the participant to get better, to recover, to be saved. For the participant, the suffering of illness resembles the experience of dying—at least the

Acknowledgements

This work was supported by grants from the Thyne Reid Trust No. 1 (Education), the late Mrs. Caroline Simpson and Mrs. Clare Sayers.

References (39)

  • A.H Hawkins

    Reconstructing illnessStudies in pathography

    (1993)
  • S.H Heap et al.

    The theory of choiceA critical guide

    (1994)
  • E.T Higgins

    Self-discrepancyA theory relating self and affect

    Psychological Review

    (1987)
  • E.T Higgins et al.

    Self-discrepancies and emotional vulnerabilityHow magnitude, accessibility, and type of discrepancy influence affect

    Journal of Personality and Social Psychology

    (1986)
  • A Kleinman

    Patients and healers in the context of culture—an exploration of the borderland between anthropology, medicine and psychiatry

    (1981)
  • A Kleinman

    The illness narratives—suffering, healing and the human condition

    (1988)
  • M Little et al.

    Surviving survivalLife after cancer

    (2001)
  • M Little et al.

    Survivorship and discourses of identity

    Psycho-oncology

    (2002)
  • M Little et al.

    Approval and disapproval in the narratives of patients with colorectal cancer and their carers

    Health

    (1999)
  • Cited by (0)

    View full text