Materials to Prepare Hospice Families for Dying in the Home

Abstract

Many changes occur in the final hours of life. Family members of those dying at home need to be prepared for these changes, both to understand what is happening and to provide care. The objectives of this study were to describe (1) the written materials used by hospices to prepare families for dying in the home setting and (2) the content of such materials. Questionnaires were sent to 400 randomly selected hospices, of which 170 responded (45.3%) sending their written materials. The most frequently used publications were Gone from My Sight (n = 118 or 69.4%), Final Gifts (n = 44 or 25.9%) and Caregiving (n = 14 or 8.2%). Half (56.5%) of the hospices used other publications and a majority (n = 87 or 51.2%) used multiple publications. Materials were given to the families by nurses (78.2%) or social workers (67.6%). More than 90% of the hospices had materials that addressed the following signs of impending death: decreased fluid intake, decreased food intake, breathing pattern changes, cold extremities, mottling, increased sleeping, changes at the moment of death, audible secretions, urinary output changes, disorientation, incontinence, overall decline and restlessness. Seven signs were addressed less than 30% of the time; pain (28.2%), dyspnea (19.4%), bed-bound state (18.2%), skin changes (18.2%), vital sign changes (17.1%), surge of energy (11.8%) and mandibular breathing (5.9%). Hospice staff should know the content of the materials offered by their agency so they can verbally address the gaps between the written materials and family needs.