title: Dynamic preferences for site of death among patients with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure.
abstract: BACKGROUND
  To die at the preferred site is a key principle of a good death.
  
  
  OBJECTIVE
  To examine one-year stability of preferences for site of death among patients with advanced chronic organ failure, and to assess agreement between the actual site of death and the site patients indicated in advance as their preferred site.
  
  
  METHODS
  Clinically stable outpatients (n=265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess their preferred site of death. One-year follow-up was completed by 77.7% of the patients. A bereavement interview was done with the closest relative of patients who died within two years after baseline (n=66, 24.9%) to assess their actual site of death.
  
  
  RESULTS
  During one-year follow-up, 61.2% of the patients changed their preference for site of death. During the home interview before their death, 51.5% reported to prefer to die at home. A considerable portion of the patients (57.6%) died in the hospital, and 39.4% of the patients died at the site they reported previously as their preferred site (κ=0.07, P=0.42).
  
  
  CONCLUSIONS
  Preferences for site of death may change in patients with advanced chronic organ failure. Future studies should explore whether and to what extent discussing the possibilities for the site of end-of-life care as a part of advance care planning can prepare patients and relatives for in-the-moment decision making and improve end-of-life care.
  
  
  BACKGROUND
  NTR 1552 Dutch Trial Register.
authors.affiliation: Program Development Centre, Centre of Expertise for Chronic Organ Failure (CIRO+), Horn, The Netherlands. Electronic address: daisyjanssen@ciro-horn.nl.
authors.forename: Daisy J A
authors.initials: DJ
authors.lastname: Janssen
authors.forename: Martijn A
authors.initials: MA
authors.lastname: Spruit
authors.forename: Jos M G A
authors.initials: JM
authors.lastname: Schols
authors.forename: Emiel F M
authors.initials: EF
authors.lastname: Wouters
mesh_terms: D032722:Advance Care Planning / Q000706:statistics & numerical data*; D000368:Aged; D001293:Attitude to Death; D002908:Chronic Disease; D005260:Female; D006333:Heart Failure / Q000401:mortality* / Q000523:psychology; D006801:Humans; D007676:Kidney Failure, Chronic / Q000401:mortality* / Q000523:psychology; D008137:Longitudinal Studies; D008297:Male; D020380:Needs Assessment; D009426:Netherlands / Q000453:epidemiology; D057240:Patient Preference / Q000523:psychology / Q000706:statistics & numerical data*; D015995:Prevalence; D029424:Pulmonary Disease, Chronic Obstructive / Q000401:mortality* / Q000523:psychology; D013727:Terminal Care / Q000523:psychology* / Q000706:statistics & numerical data
keywords: Terminal care; advance care planning; congestive heart failure; kidney failure, chronic; palliative care; pulmonary disease, chronic obstructive