OBJECTIVES: Loss of self and the transition to patient-hood have been widely discussed in relation to the experience of advanced illness. Individuals however often maintain identities or selves beyond those demanded by the circumstances of being a patient. This study explores the presentation of this personal identity and interactions between intrinsic and extrinsic elements that support or threaten its maintenance. In particular, this study examined the impact of uncertainty on the representations of self and the part played by the patient's health care professionals and the systems in which they are embedded, in limiting or reinforcing its effects.
METHODS: Complementary methods of ethnographic observation and serial narrative interviews were adopted to explore both the lo"cal social and health care context and the changing presentation of self by patients with advanced multimorbidity, chronic illness, and cancer. In total, 36 interviews were undertaken with 16 patients. Analysis was guided by concepts of time and place, combining contextual data with the unfolding patient narrative.
RESULTS: Good pain and symptom control was a necessary, but not sufficient, condition for the maintenance of a personal identity. Essential agentic elements included knowledge of appropriate and immediate sources of help. Also important were a sense of control achieved through a shared understanding with health care professionals of the condition and active management of uncertainty. In addition, the maintenance of self depended on keeping a connection with aspects of life associated with a pre-illness identity. Critically, this self was contingent on external recognition, acknowledgement, and validation.
CONCLUSION: Professional relationships that focus solely on the 'person as patient' may be insufficient for patients' needs. Health care professionals should seek to recognize and acknowledge the personal identity that may be critical to their sense of self-worth. Through an ongoing relationship guiding the patient through the uncertainties they face, health care professionals may play an essential role in sustaining the 'patient as person'. Statement of contribution What is already known on this subject? Loss of self or personal identity occurs in a range of serious conditions. The sick self is incorporated in a process of identity reconstruction. Uncertainty is an inherent aspect of serious and advanced illness. Unmanaged uncertainty results in a range of negative psychological consequences that contribute to the loss of personal identity. Information and communication with health care professionals help patients manage uncertainty. What does this study add? Sufferers may retain a personal identity continuous with a pre-illness self using internal and external resources. The pre-illness self may be subsumed by the patient self especially at times of transition and maximum uncertainty. Acknowledgement and facilitation by health care professionals can enable the preservation of the pre-illness self.