title: Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.
abstract: BACKGROUND
  Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes.
  
  
  METHODS
  A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments.
  
  
  METHODS
  420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers.
  
  
  METHODS
  Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later.
  
  
  METHODS
  
  
  
  METHODS
  preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence.
  
  
  RESULTS
  bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death.
  
  
  RESULTS
  
  
  
  METHODS
  adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β=-0.01; 95% CI, -0.12 to 0.10).
  
  
  RESULTS
  45 patients died during the study. Surrogates in SPIRIT had less anxiety (β=-1.13; 95% CI, -2.23 to -0.03), depression (β=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β=-5.75; 95% CI, -10.9 to -0.64) than controls.
  
  
  CONCLUSIONS
  Study was conducted in a single US region.
  
  
  CONCLUSIONS
  SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.
authors.affiliation: School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC. Electronic address: songm@email.unc.edu.
authors.forename: Mi-Kyung
authors.initials: MK
authors.lastname: Song
authors.affiliation: School of Nursing, University of Wisconsin-Madison, Madison, WI.
authors.forename: Sandra E
authors.initials: SE
authors.lastname: Ward
authors.affiliation: School of Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC.
authors.forename: Jason P
authors.initials: JP
authors.lastname: Fine
authors.affiliation: School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC.
authors.forename: Laura C
authors.initials: LC
authors.lastname: Hanson
authors.affiliation: School of Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC.
authors.forename: Feng-Chang
authors.initials: FC
authors.lastname: Lin
authors.affiliation: University of North Carolina Kidney Center, Chapel Hill, NC.
authors.forename: Gerald A
authors.initials: GA
authors.lastname: Hladik
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD.
authors.forename: Jill B
authors.initials: JB
authors.lastname: Hamilton
authors.affiliation: School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC.
authors.forename: Jessica C
authors.initials: JC
authors.lastname: Bridgman
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D001007:Anxiety / Q000523:psychology; D001601:Bereavement; D003220:Conflict, Psychological; D003657:Decision Making; D003863:Depression / Q000523:psychology; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010347:Patient Care Planning; D010358:Patient Participation / Q000523:psychology*; D019727:Proxy / Q000523:psychology*; D006435:Renal Dialysis; D016037:Single-Blind Method; D013313:Stress Disorders, Post-Traumatic / Q000523:psychology; D013727:Terminal Care / Q000379:methods* / Q000523:psychology
keywords: Advance care planning (ACP); advanced kidney disease; bereavement; death; dyad congruence; emotional distress; end-of-life decision making; end-stage renal disease (ESRD); hemodialysis; life-sustaining treatment; medical decision; patient education intervention; patient-surrogate dyad; randomized controlled trial (RCT); surrogate decision maker; treatment options