title: Patients' priorities for treatment decision making during periods of incapacity: quantitative survey.
abstract: OBJECTIVE
  Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.
  
  
  METHODS
  We employed a self-administered, quantitative survey of patients in a tertiary care center.
  
  
  RESULTS
  Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.
  
  
  CONCLUSIONS
  Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.
authors.affiliation: Department of Social Science,Health & Medicine, King's College London,London,United Kingdom.
authors.forename: Annette
authors.initials: A
authors.lastname: Rid
authors.affiliation: Biostatistics & Clinical Epidemiology Service,The Clinical Center, National Institutes of Health,Bethesda,Maryland.
authors.forename: Robert
authors.initials: R
authors.lastname: Wesley
authors.affiliation: St. Elizabeth's Hospital,Washington,District of Columbia.
authors.forename: Mark
authors.initials: M
authors.lastname: Pavlick
authors.affiliation: Nephrology Division,University of South Florida Morsani College of Medicine,Lehigh Valley Health Network,Allentown,Pennsylvania.
authors.forename: Sharon
authors.initials: S
authors.lastname: Maynard
authors.affiliation: Department of Medicine,George Washington University Medical Faculty Associates,Washington,District of Columbia.
authors.forename: Katalin
authors.initials: K
authors.lastname: Roth
authors.affiliation: Department of Bioethics,The Clinical Center, National Institutes of Health,Bethesda,Maryland.
authors.forename: David
authors.initials: D
authors.lastname: Wendler
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000592:standards*; D000368:Aged; D003657:Decision Making; D004219:District of Columbia; D005191:Family Characteristics; D005195:Family Relations; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D019727:Proxy; D011795:Surveys and Questionnaires
keywords: Advance care planning; Advance directive; Incapacitated patients; Patient priorities; Surrogate decision making