Patient-centered vs. caregiver-centered communication: Negotiating information needs in end-of-life care

Objective: Caregivers of the terminally ill face many complicated tasks including providing direct patient care, communicating with clinicians, and managing the logistical demands of daily activities.  Caregivers’ information needs related to these tasks change when patients transition from home-based care to inpatient facilities. This study compares caregivers’ experiences providing care in a home setting versus an inpatient hospice facility to understand how site of care shapes caregivers’ needs for information support.  

Methods: Data were collected using participation observations of clinician, caregiver, and patient interactions: 18 hours in a hospice inpatient facility and 12 hours in homes.  An open coding scheme of field notes was developed to identify themes in caregiver-identified priorities for informational support.

Results: Caregiver information needs in the homecare setting were patient-centered: properly managing patient medication, medical equipment, and declining patient mobility. Factors influencing these information needs were caregivers’ medication knowledge, training, financial resources, and social support.

Caregiver information needs when patients were receiving care in an inpatient unit were caregiver-centered: managing interpersonal/family communication, long-term care planning issues, and identifying additional sources for families’ emotional and logistical support.  Determinants of these information needs were number of caregivers involved, their respective caregiving roles, and caregiver goals and preferences.   

Conclusions: The site of care for terminally ill patients influences the type of informational support caregivers request from hospice staff. The transition between home and clinical care creates dynamic information needs, which may shift from patient-centered to caregiver-centered. Providers should take this into account when delivering information to caregivers.