title: Deciding in the dark: advance directives and continuation of treatment in chronic critical illness.
abstract: OBJECTIVE
  Chronic critical illness is a devastating syndrome for which treatment offers limited clinical benefit but imposes heavy burdens on patients, families, clinicians, and the health care system. We studied the availability of advance directives and appropriate surrogates to guide decisions about life-sustaining treatment for the chronically critically ill and the extent and timing of treatment limitation.
  
  
  METHODS
  Prospective cohort study.
  
  
  METHODS
  Respiratory Care Unit (RCU) in a large, tertiary, urban, university-affiliated, hospital.
  
  
  METHODS
  Two hundred three chronically critically ill adults transferred to RCU after tracheotomy for failure to wean from mechanical ventilation in the intensive care unit.
  
  
  METHODS
  None.
  
  
  RESULTS
  We interviewed RCU caregivers and reviewed patient records to identify proxy appointments, living wills, or oral statements of treatment preferences, resuscitation directives, and withholding/withdrawal of mechanical ventilation, nutrition, hydration, renal replacement and vasopressors. Forty-three of 203 patients (21.2%) appointed a proxy and 33 (16.2%) expressed preferences in advance directives. Do not resuscitate directives were given for 71 patients (35.0%). Treatment was limited for 39 patients (19.2%). Variables significantly associated with treatment limitation were proxy appointment prior to study entry (time of tracheotomy/RCU transfer) (odds ratio = 6.7, 95% confidence interval [CI], 2.3-20.0, p = 0.0006) and palliative care consultation in the RCU (OR = 40.9, 95% CI, 13.1-127.4, p < 0.0001). Median (interquartile range) time to first treatment limitation was 39 (31.0-45.0) days after hospital admission and 13 (8.0-29.0) days after RCU admission. For patients dying after treatment limitation, median time from first limitation to death ranged from 3 days for mechanical ventilation and hydration to 7 days for renal replacement.
  
  
  CONCLUSIONS
  Most chronically critically ill patients fail to designate a surrogate decision-maker or express preferences regarding life-sustaining treatments. Despite burdensome symptoms and poor outcomes, limitation of such treatments was rare and occurred late, when patients were near death. Opportunities exist to improve communication and decision-making in chronic critical illness.
authors.affiliation: Division of Pulmonary and Critical Care Medicine, VA Pittsburgh Health Care System, Pittsburgh, PA, USA. sharon.camhi@va.gov
authors.forename: Sharon L
authors.initials: SL
authors.lastname: Camhi
authors.forename: Alice F
authors.initials: AF
authors.lastname: Mercado
authors.forename: R Sean
authors.initials: RS
authors.lastname: Morrison
authors.forename: Qingling
authors.initials: Q
authors.lastname: Du
authors.forename: David M
authors.initials: DM
authors.lastname: Platt
authors.forename: Gary I
authors.initials: GI
authors.lastname: August
authors.forename: Judith E
authors.initials: JE
authors.lastname: Nelson
mesh_terms: D000328:Adult; D016223:Advance Directives / Q000706:statistics & numerical data*; D000368:Aged; D000369:Aged, 80 and over; D002908:Chronic Disease; D016638:Critical Illness / Q000628:therapy*; D005260:Female; D006801:Humans; D008020:Life Support Care / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D055815:Young Adult