title: Ethical frameworks for surrogates' end-of-life planning experiences.
abstract: BACKGROUND
  Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates' day-to-day experiences in end-of-life care planning for incapacitated adults.
  
  
  OBJECTIVE
  This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates' experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision-making research.
  
  
  RESULTS
  Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates' decision making, outcomes for surrogates, and an overarching theme of "wanting to do the right thing" for their loved one and/or themselves.
  
  
  CONCLUSIONS
  Understanding the complexity of surrogates' experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks.
  
  
  CONCLUSIONS
  Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates' end-of-life care planning experiences.
authors.affiliation: University of Pennsylvania, USA.
authors.forename: Hyejin
authors.initials: H
authors.lastname: Kim
authors.affiliation: University of Pennsylvania, USA.
authors.forename: Janet A
authors.initials: JA
authors.lastname: Deatrick
authors.affiliation: University of Pennsylvania, USA.
authors.forename: Connie M
authors.initials: CM
authors.lastname: Ulrich
mesh_terms: D003657:Decision Making; D004993:Ethics, Nursing; D005190:Family / Q000523:psychology*; D006801:Humans; D013727:Terminal Care / Q000523:psychology* / Q000592:standards*
keywords: End-of-life care; ethics; family; surrogate decision making; systematic review