Striving for Balance: Palliative Care Patients’ Experiences of Making Everyday Choices

Abstract

A fundamental principle of palliative care is the provision of patient-centred care, an approach explicitly based on the patient's perspective. Although much attention has been given to determining patients’ preferences for involvement in medical decisions, choices related to personal and nursing care routines have been largely ignored in the literature. Data from participant observations of nurse-patient interactions involving 16 palliative care patients and their nurses as well as 10 in-depth open-ended interviews with patients were analyzed using grounded theory methods. Although the choices made by patients appeared uncomplicated on the surface, the context of unfamiliarity, uncertainty, and unpredictability in palliative care increased the underlying complexity of decision making. Through a process of deliberation and trade-offs, patients attempted to regain or maintain some balance in their lives. This process of striving for balance consisted of three overlapping phases: weighing things up, communicating choice, and living with one's choices.