Introduction. As death approaches and health care professionals communicate a terminal prognosis they often introduce information about and options for end-of-life care. Family caregivers of people who are terminally ill may struggle to comprehend the meaning and impact of this formal communication. Moreover, communication about an approaching death is perceived through a filter of anticipatory grief and loss. Miscommunication between providers and family members can lead to misunderstanding and may contribute to limited utilization of end-of-life options such as hospice care.

Purpose. The purpose of this exploratory descriptive study was to investigate family-provider communication about terminal illness and hospice utilization. The study also explored perceptions of appropriate timing for family conferences about illness progression and end-of-life care from the perspectives of both hospice professionals and caregivers.

Methods. This 3-phase project utilized mixed qualitative methods in an equal status sequential design. During Phase I ethnography was used; 7 professional hospice teams were observed during weekly interdisciplinary meetings over a 3-month period. Examples of communication with patients and families were recorded and used to develop questions for Phase II which involved focus groups and written follow-up surveys with hospice professionals from all disciplines (N=54). Phase III involved in-depth interviews with 59 caregivers of 50 hospice patients who died from cancer after less than two weeks of hospice care. Atlas ti software was used as a tool for qualitative data management and coding; both axial and open coding were employed.

Results. “We're not on the same page” was an cross-cutting theme that initially emerged from the ethnography and described disjointed family-provider communication. Subsequently during focus groups, hospice professionals were asked to describe what this phrase meant and how communication with families becomes fragmented. Three main themes emerged: (1) Family Members-Disconnect was used to describe situations in which either misunderstanding or non-acceptance of the person's terminality existed among family members; (2) Family-Provider-Disconnect was used to describe situations in which communication between the family and the provider(s) became disjointed and (3) Multiple Disconnects was used to describe situations when miscommunication was occurring both between family members and with providers, simultaneously. Analysis of in-depth interviews with family caregivers yielded the development of a synchronic or “freeze time” model trajectory which illuminates caregivers' perspectives of the significant turning points of an illness when family-provider conferences are critical. In addition, family members' perceptions of the essential ingredients of these conferences were distilled and synthesized.

Implications. Family-provider communication is a critical component of good end-of-life care. Social work practitioners in many healthcare environments, facilitate meaningful family-provider communication through ongoing family assessment, clarification and reframing as the illness progresses. Social work research in end-of-life care brings an important ecological systems perspective which can be used to understand the complex interrelationship between families and the healthcare system, thus contributing to improved care for both people who are dying and their families.