THE LIVED EXPERIENCE OF HOME HOSPICE NURSES MANAGING PATIENTS WITH TERMINAL RESTLESSNESS

Abstract

Terminal restlessness is a set of observable, unsettled behaviors at end of life. It is often described as a form of delirium and may occur in up to 85% of dying patients (Breitbart & Alici, 2008). Signs and symptoms may include impaired consciousness, confusion, physical restlessness, moaning, involuntary muscle twitching, fidgeting, or seizures (Burke 1997). The National Hospice and Palliative Care Organization (NHPCO) reports that in 2006, 47.1% of patients died in private residences (NHPCO, 2007). Patients who choose to die at home receive specialized nursing care from home hospice nurses who provide expertise in symptom management and emotional support, with much attention also given to caregivers. Studies representing home hospice care are few, as are studies that examine the experiences of home hospice nurses with terminal restlessness. The purpose of this study was to describe the lived experiences of home hospice nurses managing patients with terminal restlessness. Kolcaba's theory of comfort provided the theoretical framework for this study. A purposive sample included ten home hospice nurses from three home hospice agencies and three nurses with hospice experience referred through snowballing. Semistructured interviews were conducted and included questions about experiences with terminal restlessness, use of pharmacologic and non-pharmacologic interventions, and teaching done with families regarding terminal restlessness. Audio taped interviews were transcribed verbatim. Phenomenological analysis was conducted using Colaizzi's methodology. Four major themes emerged which described management of patients with terminal restlessness as experienced by home hospice nurses. These themes included: (a) putting together the puzzle, (b) knowledge deficit, (c) fill the tank, and (d) team effort. Subthemes were also identified and discussed for each theme. Terminal restlessness has many labels in the medical literature and is often related to the diagnosis of delirium that is defined in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV, 1994). Home hospice nurses cannot diagnose delirium in the home but need to dialogue with physicians to develop protocols for assessment and management plans for these end-of-life symptoms. Research to understand further the various aspects of management decisions and techniques used by home hospice nurses was recommended.