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Terminal restlessness as perceived by hospice professionals

University of Louisville, School of Medicine, Louisville, Kentucky

Annatje Faul, PhD

Kent School of Social Work, University of Louisville, Louisville, Kentucky

Any hospice professional can identify the syndrome known as terminal restlessness, and all would agree that it is extremely distressing to patients as well as their families and care-givers. Often, caregivers cannot ameliorate the anguish many patients experience at life’s end. Many clinicians assert that the causes are physical resulting from medication toxicity, organ shutdown and the associated metabolic changes, pain, urinary or fecal retention, dyspnea and related hypoxia, and sepsis. Yet, many also credit psychosocial and spiritual distress as precipitating factors.

The purposes of this study were twofold: to compare the perceptions of practicing hospice clinicians with the literature related to terminal restlessness, and to determine if their experience with terminal restlessness agreed with the components of the one established scale for terminal restlessness found in the literature.

In general, the study findings corresponded to the literature in regards to frequency, definition, causes, and behavioral manifestations of terminal restlessness. The clinicians in the study supported the impact of psychosocial and spiritual causes of terminal restlessness and defined the phenomenon in terms of time period; emotional, physical, and spiritual distress; changes in consciousness; and increased activity. However, the study did not support the inclusion of impaired consciousness and withdrawal as comprised in the terminal restlessness scale.

Key Words: restlessness • delirium • terminal care • palliative care

American Journal of Hospice and Palliative Medicine®, Vol. 22, No. 4, 277-282 (2005)
DOI: 10.1177/104990910502200408


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