Hospice Staff Perceptions of Information Needs Among Patients and Families During Hospice Admissions Visits

Lack of hospice knowledge is 1 of the major barriers to its utilization. Initial meetings between patients/families and hospice admissions staff occurring before hospice enrollment provide a great opportunity to clarify patients' and families' misunderstandings of hospice, address concerns, and share in-depth information, thus facilitating informed decision making. This qualitative study explored hospice admissions staff's perceptions of patients' and families' informational needs identified during initial meetings. Interviews conducted with 16 admissions staff members from 4 hospice agencies were analyzed using thematic analysis. Five areas of informational needs emerged. Patients and families often lacked knowledge of patient condition and illness progression and awareness of changes in bodily needs for nutrition/hydration and medication near death. Misconceptions about pain medicine in hospice are another area identified. Patients and families did not always realize risks of life-sustaining treatments. Finally, the availability of interdisciplinary service was not often known. Insufficient patient-health care provider communication contributes to lack of information in these areas. Although admissions staff can fill information gaps, patient-health care provider conversations on end-of-life issues should occur earlier than waiting until the patient is referred to hospice. Future studies should examine strategies to address informational needs and assess patient/family satisfaction with provided information.