title: Living with advanced heart failure or COPD: experiences and goals of individuals nearing the end of life.
abstract: The last phase of life of patients with end-stage heart failure (HF) or chronic obstructive pulmonary disease (COPD) is marked by high symptom burden and uncertainty about the future. Few enroll in hospice, and their preferences for care remain unknown. The purpose of this qualitative study was to describe the experiences and goals for care of patients with end-stage HF and COPD who were recently discharged from the hospital. Forty semi-structured interviews were completed with 20 participants. Despite conditions considered life-threatening by clinicians, participants believed they still had time. They hoped that their illnesses would remain stable, although specific experiences made them think they might be worsening. All expected that their doctors would tell them when their illnesses became life-threatening.
authors.affiliation: University of Rochester School of Nursing, 601 Elmwood Ave., Rochester, NY 14642, USA.
authors.forename: Susan E
authors.initials: SE
authors.lastname: Lowey
authors.forename: Sally A
authors.initials: SA
authors.lastname: Norton
authors.forename: Jill R
authors.initials: JR
authors.lastname: Quinn
authors.forename: Timothy E
authors.initials: TE
authors.lastname: Quill
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D002908:Chronic Disease / Q000523:psychology; D005069:Evaluation Studies as Topic; D005260:Female; D006304:Health Status; D006333:Heart Failure / Q000523:psychology*; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D009518:New York; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*
keywords: chronic illness; death and dying; heart failure; homecare; qualitative