title: Accounting for Patient Preferences Regarding Life-Sustaining Treatment in Evaluations of Medical Effectiveness and Quality.
abstract: The importance of understanding patient preferences for life-sustaining treatment is well described for individual clinical decisions; however, its role in evaluations of healthcare outcomes and quality has received little attention. Decisions to limit life-sustaining therapies are strongly associated with high risks for death in ways that are unaccounted for by routine measures of illness severity. However, this essential information is generally unavailable to researchers, with the potential for spurious inferences. This may lead to "confounding by unmeasured patient preferences" (a type of confounding by indication) and has implications for assessments of treatment effectiveness and healthcare quality, especially in acute and critical care settings in which risk for death and adverse events are high. Through a collection of case studies, we explore the effect of unmeasured patient resuscitation preferences on issues critical for researchers and research consumers to understand. We then propose strategies to more consistently elicit, record, and harmonize documentation of patient preferences that can be used to attenuate confounding by unmeasured patient preferences and provide novel opportunities to improve the patient centeredness of medical care for serious illness.
authors.affiliation: 1 Division of Pulmonary and Critical Care Medicine, the Pulmonary Center, and.|2 Evans Center for Implementation and Improvement Sciences, Department of Medicine, Boston University School of Medicine, Boston, Massachusetts.
authors.forename: Allan J
authors.identifier: 0000-0003-4685-6894
authors.initials: AJ
authors.lastname: Walkey
authors.affiliation: 3 Section of Decision Sciences, Division of General Internal Medicine, Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.|4 Department of Health Care Policy and Management, University of Pittsburgh Graduate School of Public Health, Pittsburgh, Pennsylvania.
authors.forename: Amber E
authors.initials: AE
authors.lastname: Barnato
authors.affiliation: 1 Division of Pulmonary and Critical Care Medicine, the Pulmonary Center, and.|5 Center for Healthcare Organization & Implementation Research, Edith Nourse Rogers Memorial VA Hospital, Bedford, Massachusetts; and.
authors.forename: Renda Soylemez
authors.initials: RS
authors.lastname: Wiener
authors.affiliation: 6 Division of Cardiovascular Medicine and Center for Health Outcomes and Policy, University of Michigan Medical School, Ann Arbor, Michigan.
authors.forename: Brahmajee K
authors.initials: BK
authors.lastname: Nallamothu
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000592:standards* / Q000706:statistics & numerical data*; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011787:Quality of Health Care / Q000706:statistics & numerical data*; D011788:Quality of Life / Q000523:psychology*; D016896:Treatment Outcome; D014481:United States
keywords: end-of-life care; epidemiologic biases; quality of healthcare