title: Palliative care and location of death in decedents with idiopathic pulmonary fibrosis.
abstract: BACKGROUND
  Palliative care, integrated early, may reduce symptom burden in patients with idiopathic pulmonary fibrosis (IPF). However, limited information exists on timing and clinical practice. The purpose of this study was to describe the time course of events prior to death in patients with IPF managed at a specialty center with a focus on location of death and timing of referral for palliative care.
  
  
  METHODS
  Data were retrospectively extracted from the health system's data repository and obituary listings. The sample included all decedents, excluding lung transplant recipients, who had their first visit to the center between 2000 and 2012.
  
  
  RESULTS
  Median survival for 404 decedents was 3 years from diagnosis and 1 year from first center visit. Of 277 decedents whose location of death could be determined, > 50% died in the hospital (57%). Only 38 (13.7%) had a formal palliative care referral and the majority (71%) was referred within 1 month of their death. Decedents who died in the academic medical center ICU were significantly younger than those who died in a community hospital ward (P = .04) or hospice (P = .001).
  
  
  CONCLUSIONS
  The majority of patients with IPF died in a hospital setting and only a minority received a formal palliative care referral. Referral to palliative care occurred late in the disease. These findings indicate the need to study adequacy of end-of-life management in IPF and promote earlier discussion and referral to palliative care.
authors.affiliation: The University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC, School of Medicine, Pittsburgh, PA; Division of Pulmonary, Allergy, and Critical Care Medicine, School of Medicine, Pittsburgh, PA. Electronic address: lindellko@upmc.edu.
authors.forename: Kathleen O
authors.initials: KO
authors.lastname: Lindell
authors.affiliation: School of Nursing, School of Medicine, Pittsburgh, PA.
authors.forename: Zhan
authors.initials: Z
authors.lastname: Liang
authors.affiliation: School of Nursing, School of Medicine, Pittsburgh, PA.
authors.forename: Leslie A
authors.initials: LA
authors.lastname: Hoffman
authors.affiliation: School of Nursing, School of Medicine, Pittsburgh, PA.
authors.forename: Margaret Q
authors.initials: MQ
authors.lastname: Rosenzweig
authors.affiliation: Department of Biomedical Informatics, School of Medicine, Pittsburgh, PA.
authors.forename: Melissa I
authors.initials: MI
authors.lastname: Saul
authors.affiliation: Division of Pulmonary, Allergy, and Critical Care Medicine, School of Medicine, Pittsburgh, PA.
authors.forename: Joseph M
authors.initials: JM
authors.lastname: Pilewski
authors.affiliation: The University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC, School of Medicine, Pittsburgh, PA; Division of Pulmonary, Allergy, and Critical Care Medicine, School of Medicine, Pittsburgh, PA.
authors.forename: Kevin F
authors.initials: KF
authors.lastname: Gibson
authors.affiliation: Pulmonary, Critical Care and Sleep Medicine, Yale School of Medicine, New Haven, CT.
authors.forename: Naftali
authors.initials: N
authors.lastname: Kaminski
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis / Q000401:mortality* / Q000628:therapy*; D016040:Lung Transplantation; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D011788:Quality of Life; D012017:Referral and Consultation / Q000458:organization & administration; D013727:Terminal Care; D013997:Time Factors