Living with advanced illness: longitudinal study of patient, family, and caregiver needs

Inpatient palliative care (IPC) consults are associated with improved quality of care and less intensive utilization. However, little is known about how the needs of patients with advanced illness and the needs of their families and caregivers evolve or how effectively those needs are addressed. The objectives of this study were 1) to summarize findings in the literature about the needs of patients with advanced illness and the needs of their families and caregivers; 2) to identify the primary needs of patients, families, and caregivers across the continuum of care from their vantage point; and 3) to learn how IPC teams affect the care experience.

We used a longitudinal, video-ethnographic approach to observe and to interview 12 patients and their families before, during, and after an IPC consult at 3 urban medical centers. Additional interviews took place up to 12 months after discharge.

Five patient/family/caregiver needs were important to all family units. IPC teams responded effectively to a variety of needs that were not met in the hospital, but some postdischarge needs, beyond the scope of IPC or health care coverage, were not completely met.

Findings built upon the needs identified in the literature. The longitudinal approach highlighted changes in needs of patients, families, and caregivers in response to emerging medical and nonmedical developments, from their perspective. Areas for improvement include clear, integrated communications in the hospital and coordinated, comprehensive postdischarge support for patients not under hospice care and for their caregivers.