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.

Part 2: Family Health During and After Death of a Family Member

“…The study provided a way to learn more about the ways multiple family members and related households respond to the illness and care needs of a dying member. This study supports findings of others about the individual strains present in caregiving roles related to loss of self , personal time, and increased stress (Bottorff et al, 1998;Grant & Bean, 1992;Grant & Davis, 1997;Pearlin et al, 1981;Skaff & Pearlin, 1992). The findings also identified the need for family support similar to what others have reported, such as information needs, emotional support, and caring professional interactions (Harrington et al, 1996;Hileman & Lackey, 1990;Krishnasamy, 1996aKrishnasamy, , 1996bWingate & Lackey, 1989).…”

An exploration of self-management support in the context of palliative nursing: a modified concept analysis

“…This is increasing more recently, with ease of access through information technology. These developments bring with them the potential of patients to access incorrect information [38]. Informed decision-making and knowing the patient’s preferred choice [37] stress the importance of open and collaborative dialogue and knowledge of the patient’s own story past and present.…”

The Autonomy Experience of Patients in Palliative Care

“…The scales mostly focus on functional autonomy, and studies are often limited to autonomy in decision making. 9,11,24,29 Undeniably one of its fundamental components, autonomy is not restricted solely to decision making. Furthermore, there is scant research that enables us to understand people's experience with autonomy from a global perspective.…”

“…[8][9][10][11][12][13] The idea of control associated with autonomy influences a person's sense of dignity, represents a source of hope, and helps relieve suffering and improve quality of life. 10,[14][15][16] Expressing and respecting autonomy are undeniably important factors in promoting the well-being of people near the end of life.…”