The Development of a Measure of Double Awareness

Abstract

Modern medicine has allowed individuals with metastatic cancer to live longer than ever before, sometimes extending a patient’s life by several years. However, these individuals are still living with an incurable disease, and therefore live with the awareness of their own upcoming death. In this context, double awareness is a term that refers to a patient’s ability to engage meaningfully in life while also acknowledging and preparing for their death. Understanding this phenomenon holds great potential for supporting individuals living with metastatic and incurable cancers. Double awareness has been conceptualized as a sign of psychological health and is already being studied as a target for change in interventions that seek to support individuals at the end of life. However, until now there has previously been no instrument to measure or quantify this construct. The present study aims to create the first measure of double awareness by conducting a three-phase, mixed-method approach involving (1) instrument development, (2) qualitative inquiry and (3) quantitative analysis and validation. The first two phases have been completed successfully and the third phase remains in progress. Preliminary analyses of the third phase include a sample of 46 patients with metastatic cancer. Data from this sample resulted in a twenty-item, tentative measure called the “Double Awareness Scale”. This instrument has two distinct subscales, which we call Life Engagement and Death Contemplation, each containing ten items. These subscales are not additive, but instead create a “profile” in which an individual can be high or low on either subscale. The Double Awareness Scale demonstrated internal consistency and preliminary evidence for discriminant and convergent validity in this sample. Scores on the Death Contemplation subscale predicted openness to hospice services, indicating that the scale has psychological and behavioral implications for end-of-life care.