title: Living with advanced illness: longitudinal study of patient, family, and caregiver needs.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Center for Care Experience, Care Management Institute and The Permanente Federation, Oakland, CA, USA. karen.tallman@kp.org
authors.forename: Karen
authors.initials: K
authors.lastname: Tallman
authors.forename: Ruth
authors.initials: R
authors.lastname: Greenwald
authors.forename: Alice
authors.initials: A
authors.lastname: Reidenouer
authors.forename: Laurel
authors.initials: L
authors.lastname: Pantel
mesh_terms: D000369:Aged, 80 and over; D017028:Caregivers; D003142:Communication; D005190:Family; D005260:Female; D005500:Follow-Up Studies; D006301:Health Services Needs and Demand; D006760:Hospitalization; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care; D010351:Patient Discharge; D012944:Social Support; D013727:Terminal Care