Dynamics in the sense of dignity over the course of illness: A longitudinal study into the perspectives of seriously ill patients

Abstract

Background: Loss of personal dignity in patients with a serious and progressive disease is associated with psychological suffering and loss of the will to live. Preservation of a sense of dignity in the seriously ill should therefore be a primary concern throughout the illness trajectory from diagnosis onward. However, there is currently limited insight into the dynamics of patients' sense of dignity during the progression of illness.

Aim: This longitudinal qualitative study investigates patients' experiences with dignity over time in a diverse patient population (cancer, early-stage dementia and severe chronic illnesses).

Method: Nineteen patients were interviewed annually (max. 4 years), resulting in a data base of 56 interviews in total. Data were analyzed making use of thematic analysis.

Results: Three different trajectories over time could be distinguished: (a) a Dynamic Equilibrium in which the individual's sense of dignity was temporarily diminished followed by a return to previous levels; (b) a Downward Trend in which the sense of dignity was diminished with progression of the disease without a return to previous levels; and (c) Stability in which the sense of dignity remained unaltered despite changes in circumstances.

Conclusion: While there is a small group of patients for whom dignity remains unaffected by their disease experiences, most patients go through difficult times during which they struggle to maintain or regain their sense of dignity in the face of progressive loss. This longitudinal study offers insight into the dynamics behind this and enhances our understanding of why some patients manage to maintain their sense of dignity while others suffer from a diminished sense of dignity.

Keywords: Cancer; Chronic illness; Dementia; Dignity; Longitudinal study; Qualitative study.