Abstract and Introduction
Abstract
Purpose: This study explored the role control plays in the dying process of terminally ill elders by investigating the aspects of the dying process over which they seek to exercise control, the strategies they use, and whether they desire to exercise more control.
Design and methods: In-depth face-to-face interviews were conducted with 84 terminally ill elders receiving hospice care. Directed and conventional content analysis methods were used to identify main themes and patterns.
Results: The results revealed that all 84 elders were using at least 1 primary control strategy in their dying process, 83 of whom did so in combination with another primary or compensatory secondary control strategy. Decision making, independence, mental attitude, instrumental activities of daily living, activities of daily living, and relationships were aspects of the dying process over which the respondents sought to exercise control. Over half of the respondents wanted more control; however, they felt their illness prevented it.
Implications: The findings highlight the importance of terminally ill elders' having opportunities to exercise control in their dying process. Practitioners need to ensure that these opportunities exist and to be aware that elders are adaptive and use multiple strategies in exercising control.
Introduction
Research on end-of-life care has produced evidence that achieving a sense of control is viewed by terminally ill individuals (Singer, Martin, & Kelner, 1999; Volker, Kahn, & Penticuff, 2004b; Wilson, et al., 2007) and those who care for them (Teno, Casey, Welch, & Edgman-Levitan, 2001) as playing an important role in the quality of their dying process. Terminally ill individuals have been found to consider the ability to exercise control as a desirable psychosocial outcome (Singer et al.) and a psychological comfort (Ganzini, Johnston, McFarland, Tolle, & Lee, 1998). Furthermore, the inability to achieve a sense of control has been associated with moderate to extreme suffering for some terminally ill individuals (Wilson et al., 2007) and a desire to hasten death for others (Back, Wallace, Starks, & Pearlman, 1996; Chin, Hedberg, Higginson, & Fleming, 1999; Coyle & Sculco, 2004; Oregon Department of Human Services [ODHS], 2000). Although sense of control evidently plays a key role in the psychological well-being of terminally ill individuals, less clear are the aspects of the dying process over which terminally ill individuals want to exercise control and the strategies they use for doing so.
In this article, we seek to advance our understanding of the role control plays in the dying process of terminally ill elders by investigating the aspects of the dying process over which terminally ill elders seek to exercise control, the strategies they use to do so, and whether they desire to exercise more control. By gaining a deeper understanding of the role control plays in the dying process of elders, health care and service providers and informal caregivers can work toward ensuring that elders exercise control in their dying process, thereby working toward the goal of improving the quality of end-of-life care.