title: End-of-life care of patients with idiopathic pulmonary fibrosis.
abstract: BACKGROUND
  Idiopathic pulmonary fibrosis (IPF) is a progressive disease with median survival from 2 to 7 years. Palliative care is an important part of patients´ care as lung transplantation is not an option for the majority of patients. The aim of this study was to describe treatment practices, decision-making and symptoms during end-of-life care of IPF patients.
  
  
  METHODS
  We identified 59 deceased patients from a national prospective IPF cohort study (FinnishIPF) and analyzed retrospectively their health care documentation during the 6 months that preceded death.
  
  
  RESULTS
  Hospital was the place of death for 47 patients (80 %). A majority of the patients (93 %) were hospitalized for a mean of 30 days (range 1-96 days) during the last 6 months of their life. Altogether, patients spent 15 % of their last 6 months of life in a hospital. End-of-life decisions and do not resuscitate (DNR) orders were made for 19 (32 %) and 34 (57 %) of the patients, respectively, and 22 (42 %) of these decisions were made ≤ 3 days prior to death. During the final hospital stay, antibiotics were given to 79 % and non-invasive ventilation to 36 % of patients. During the last 24 h of life, radiologic imaging or laboratory tests were taken in 19 % and 53 % of the hospitalized patients, respectively. These tests and life prolonging therapies were more common in tertiary hospitals compared to other places of death. Dyspnea (66 %) and pain (31 %) were the most common symptoms recorded. Opioids were prescribed to 71 % of the patients during the last week before death.
  
  
  CONCLUSIONS
  The majority of IPF patients died in a hospital with ongoing life-prolonging procedures until death. The frequent use of opioids is an indicator of an intention to relieve symptoms, but end-of-life decisions were still made very late. Early integrated palliative care with advance care plan could improve the end-of-life care of dying IPF patients.
authors.affiliation: Helsinki University Central Hospital, Comprehensive Cancer Center and Faculty of Medicine, University of Helsinki, Cancer Center, PoBox 180, FI-00029, HUS, Helsinki, Finland. kaisa.rajala@hus.fi.|Palliative Unit, Helsinki University Central Hospital, Comprehensive Cancer Center, Haartmaninkatu 4, FI-00290, Helsinki, Finland. kaisa.rajala@hus.fi.
authors.forename: Kaisa
authors.identifier: http://orcid.org/0000-0001-6198-3627
authors.initials: K
authors.lastname: Rajala
authors.affiliation: TAYS Palliative Unit, Department of Oncology, Tampere University Hospital and School of Medicine, University of Tampere, Teiskontie 35, 33520, Tampere, Finland.
authors.forename: Juho T
authors.initials: JT
authors.lastname: Lehto
authors.affiliation: University of Helsinki, Faculty of Medicine, Helsinki, Finland.|Transplantantation Laboratory, Pulmonary Medicine, B411 Haartmaninkatu 3, FI-00290, Helsinki, Finland.
authors.forename: M
authors.initials: M
authors.lastname: Saarinen
authors.affiliation: University of Helsinki, Faculty of Medicine, Helsinki, Finland.|Transplantantation Laboratory, Pulmonary Medicine, B411 Haartmaninkatu 3, FI-00290, Helsinki, Finland.
authors.forename: E
authors.initials: E
authors.lastname: Sutinen
authors.affiliation: Helsinki University Central Hospital, Comprehensive Cancer Center and Faculty of Medicine, University of Helsinki, Cancer Center, PoBox 180, FI-00029, HUS, Helsinki, Finland.
authors.forename: T
authors.initials: T
authors.lastname: Saarto
authors.affiliation: Department of Pulmonary Medicine, University of Helsinki and Helsinki University Hospital, Heart and Lung Center, PoBox372, FI-00029, HUS, Helsinki, Finland.
authors.forename: M
authors.initials: M
authors.lastname: Myllärniemi
mesh_terms: D032722:Advance Care Planning / Q000706:statistics & numerical data; D000368:Aged; D000369:Aged, 80 and over; D000701:Analgesics, Opioid / Q000627:therapeutic use; D014151:Anti-Anxiety Agents / Q000627:therapeutic use; D000900:Anti-Bacterial Agents / Q000627:therapeutic use; D001007:Anxiety / Q000188:drug therapy; D015331:Cohort Studies; D003657:Decision Making; D004417:Dyspnea / Q000188:drug therapy; D005260:Female; D005387:Finland; D006738:Hospices; D006760:Hospitalization / Q000706:statistics & numerical data; D006764:Hospitals, Community; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis / Q000628:therapy*; D007362:Intensive Care Units; D007902:Length of Stay; D008297:Male; D008875:Middle Aged; D063087:Noninvasive Ventilation / Q000706:statistics & numerical data; D009735:Nursing Homes; D010146:Pain / Q000188:drug therapy; D016414:Resuscitation Orders; D012189:Retrospective Studies; D013727:Terminal Care; D062606:Tertiary Care Centers
chemical_list: D000701:Analgesics, Opioid; D014151:Anti-Anxiety Agents; D000900:Anti-Bacterial Agents
keywords: Advance care planning; End-of-life care; End-of-life decision; Idiopathic pulmonary fibrosis; Symptoms