Considering a future which may not exist: the construction of time and expectations amidst advanced-stage cancer

Abstract

Time considerations are fundamental to risk, with conceptions of time located in the future intrinsic to experiences of uncertainty and considerations of the self. The quality and quantity of such future-time is not often problematised within risk research, with time usually taken for granted as a standard continuum. Focusing on the experiences of cancer patients, with limited prognoses but who were partaking in or who had recently been involved in drug trials, this study explored how participants attempted to cope amidst unusually elevated levels of vulnerability and uncertainty. Within our analysis of qualitative data from 13 in-depth, narrative interviews, the heightened risk and reflexivity experienced by participants illuminated features of future-time which are often overlooked. Time emerged as a complex, multi-dimensional, paradoxical and highly pliable notion. Uncertainty, though problematic for patients, also facilitated agency where risk information was reinterpreted in a more favourable sense and hope was harnessed to extend future-time through the envisaging of the possible. Hope was thus an important tool in the management and construction of future-time, while future-time in turn created an imagined space towards which existing hopes could be oriented and within which new hopes could be located. The imagining of positive futures, or the bracketing away of negative futures, enabled time to be construed pragmatically, with resources for such constructions rooted in the social contexts of the patients. Tensions and paradoxes were regularly apparent within the multiple future-times which patients worked with. Cognitive and emotion work was necessary for those living ‘in-between’ such contrasting futures.

Keywords:

• cancer
• end-of-life
• hope
• paradox
• risk
• time
• uncertainty
• vulnerability

Acknowledgements

The authors are especially grateful to the participants, who shared their time and their experiences so generously, as well as the clinical staff of both hospitals for their assistance in providing access. The collaboration and involvement of Dr Hanneke van Laarhoven (Department of Medical Oncology) and Dr Ellen Smets and Marij Hillen (Department of Medical Psychology) within the Academic Medical Centre, University of Amsterdam were vital to the study and the authors are grateful to them for their input, encouragement and comments on an initial draft of the paper. The anonymous reviewers and Andy Alaszewski provided further very useful comments and suggestions on earlier versions of the manuscript.

Notes

^1. Terminal is used here in the non-clinical sense. Clinicians referred to advanced-cancer diagnoses and avoided use of the word terminal which has a separate, specific meaning. However, the patient participants tended to refer to themselves as having ‘terrible’ forms of chronic, incurable and deadly diseases as reflected in their limited life-expectancy prognoses. We seek to capture these understandings by referring to notions of ‘terminal illness’ which we think adequately reflect patients’ perspectives.

^2. These clinical trials were for different drugs, but were understood by the patients as involving drugs which could slow down their cancer rather than ‘curing’ them. This also pertains to their understanding of illness as ‘terminal’, see note 1 above.

^3. Each of these cancers have quite different characteristics in terms of virulence, treatability and time frames. Patients were also diagnosed with different stages of these cancers.

^4. ‘Future-time’ is located in the future, while dureé involves a consciousness of the passing of time in present, though the extent to which one focuses upon certain futures, bracketing off others, is fundamental to the experiencing of the present (Kierkegaard 1957, Hannay 1989).