Exercising Choice, Keeping Control

One of the key issues a dying person faces as their illness progresses is the loss of control. As a person’s energy level diminishes and their ability to take care of the activities of daily living declines, they become more and more dependent on the assistance of others. On a practical level this is just the nature of the dying process. But on a psychological level a dying person often struggles with their dependence on others and the loss of their role in the family and their circle of friends. People treat the dying person as if he or she is a child, which alters their relationships. Added to that is the frustration of not being able to hold back further loss or knowing when death will finally take him or her.

For all these reasons it is essential to give the dying the right to make choices in their care and about their lives even in the face of decline, for as long as they are cognitively able to do so. And even when they can’t any longer make those choices, the family and caregivers should know what a person wanted and follow those wishes. Choice is the mechanism for exercising control.

In the approach to end of life that is embodied in INELDA’s model there are many ways doulas can work with the dying to help them maintain or rediscover a sense of control. Doulas might work on the meaning in their life, help them create a legacy project, or plan for exactly how they envision the space and activities around them in the last days. Doulas might encourage and assist a dying person in dealing with unfinished business in ways he or she wants. And doulas can teach the use of guided visualization, which gives the dying a way to intervene for themselves in symptom management or for dealing with the psychological and spiritual struggles of decline and impending death.

Of course for some people the ultimate act of control, the ultimate choice, is whether or not to exercise their right to medically aided dying in those states where this is allowed.