The impact on the family of terminal restlessness and its management

The purpose of this qualitative study was to explore and describe the impact of terminal restlessness and its management upon family members who were witness to the event. Approximately 25% - 85% of terminally ill patients may experience the symptoms associated with terminal restlessness during the hours or days before their death. They may be physically agitated and cognitively impaired and often appear to be suffering. Treatment of these severe symptoms usually involves the use of sedating medications that can affect these patients' ability to communicate with their families. Using a phenomenological research approach, two focus groups and 20 individual interviews were held with bereaved family members and hospice staff. A content analysis of the data resulted in the emergence of several core themes that reflected the participants' perceptions and experiences; the multidimensionality of suffering, the need for communication, feelings of ambivalence, the need for information and sensitivity and respect. It is suggested that the development and implementation of a multiprofessional team protocol could address the specific concerns, information and care needs of these families at this critical time.