Ever decreasing circles: terminal illness, empowerment and decision-making

Abstract

INTRODUCTION: Empowerment is the personal and political processes patients go through to enhance and restore their sense of dignity and self-worth. However, there is much rhetoric surrounding nurses facilitating patients’ daily choices and enabling empowerment. Furthermore, there is frequently an imbalance of power sharing, with the patient often obliged to do what the health professional wants them to do. METHOD: This phenomenological study describes the lived experience of patients attending an outpatient clinic of a community hospice. A qualitative study using Max van Manen’s phenomenological hermeneutic method was conducted to explore issues surrounding empowerment and daily decisionmaking with terminally ill patients. The participants’ stories became a stimulus for learning about the complexities of autonomy and empowerment. It also engendered reflection and analysis of issues related to power and control inequities in current nursing practices. FINDINGS: The results revealed not only the themes of chaoticum, contracting worlds and capitulation, but that health professionals should be mindful of the level of control they exert. Within the palliative care setting they need to become partners in care, enhancing another person’s potential for autonomous choice. CONCLUSION: Empowerment must not be something that simply occurs from within, nor can it be done by another. Intentional efforts by health professionals must enable terminally ill people to be able to stay enlivened and connected with a modicum of autonomy and empowerment over daily decisions, no matter how mundane or monumental they might be. KEYWORDS: Phenomenology; empowerment; autonomy; terminal care; decision-making