Family Narratives of Terminal Illness in the Absence of End-of-Life Care

• In Event: Dying, Death, and Bereavement: End-of-Life Conversations and Narratives within the Family

Abstract

Research performed in the last two decades recognizes the “intimate reciprocity of suffering by patients and families experiencing terminal illness” (Sherman, 1998, pp. 357-358). The caregiver and care receiver intertwine in a journey of pain, distress, loss, suffering and intimacy like no other. The rewards of caring for a terminally ill relative can simultaneously produce profound psychological effects, increase anxiety and depression, cause deterioration in other relationships, and suppress professional roles and involvement in personally fulfilling and healthy activities (Higginson, 1998). As a patient’s physical pain, suffering and existential distress increase, so does the family’s as they compensate to meet the formidable needs of their loved one.

Over the last three years we have collected longitudinal narratives from families experiencing the terminal illness of a family member. In this presentation we will carefully explore the unfolding case of the Wall family as they faced a terminal diagnosis (adenocarcinoma of unknown primary), medical care, extensive travel, and death—all within the space of 40 days. Their story is told by the primary caretaker, Katy Wall, in her recorded and transcribed words. Following the Wall’s unfolding case reveals sidelined family communication phenomena at crucial points in the end of life experience including: (1) incomplete medical disclosure between patient, family, and physicians, (2) abandonment of family in care taking and resource gathering during the active dying phase, (3) absent palliative care which should place family central as the unit of care, and (4) missing bereavement support.

Authors

• Elaine Wittenberg-Lyles, University of North Texas

• Joy Goldsmith, Young Harris College