title: Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.
abstract: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.
  
  
  
  A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.
  
  
  
  Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.
  
  
  
  Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.
authors.affiliation: Johns Hopkins University School of Nursing,Baltimore,Maryland.
authors.forename: Grace W K
authors.initials: GW
authors.lastname: Ho
authors.affiliation: Johns Hopkins University School of Nursing,Baltimore,Maryland.
authors.forename: Lauren
authors.initials: L
authors.lastname: Skaggs
authors.affiliation: Johns Hopkins Bloomberg School of Public Health,Baltimore,Maryland.
authors.forename: Gayane
authors.initials: G
authors.lastname: Yenokyan
authors.affiliation: Johns Hopkins University School of Nursing,Baltimore,Maryland.
authors.forename: Anela
authors.initials: A
authors.lastname: Kellogg
authors.affiliation: Center for Research Informatics,The University of Chicago,Chicago,Illinois.
authors.forename: Julie A
authors.initials: JA
authors.lastname: Johnson
authors.affiliation: University of Maryland School of Nursing,Baltimore,Maryland.
authors.forename: Mei Ching
authors.initials: MC
authors.lastname: Lee
authors.affiliation: Johns Hopkins University School of Nursing,Baltimore,Maryland.
authors.forename: Katherine
authors.initials: K
authors.lastname: Heinze
authors.affiliation: Johns Hopkins University School of Medicine and Berman Institute of Bioethics,Baltimore,Maryland.
authors.forename: Mark T
authors.initials: MT
authors.lastname: Hughes
authors.affiliation: Department of Medicine,the Divinity School,and the MacLean Center for Clinical Medical Ethics,The University of Chicago,Chicago,Illinois.
authors.forename: Daniel P
authors.initials: DP
authors.lastname: Sulmasy
authors.affiliation: Johns Hopkins University School of Nursing,Baltimore,Maryland.
authors.forename: Joan
authors.initials: J
authors.lastname: Kub
authors.affiliation: Johns Hopkins Hospital Department of Medicine,Baltimore,Maryland.
authors.forename: Peter B
authors.initials: PB
authors.lastname: Terry
authors.affiliation: Maimonides Cancer Center,Brooklyn,New York.
authors.forename: Alan B
authors.initials: AB
authors.lastname: Astrow
authors.affiliation: Sun Yat-sen University School of Nursing,Guangdong,China.
authors.forename: Jing
authors.initials: J
authors.lastname: Zheng
authors.affiliation: Brigham and Women's Hospital Department of Medicine and Harvard Medical School,Boston,Massachusetts.
authors.forename: Lisa Soleymani
authors.initials: LS
authors.lastname: Lehmann
authors.affiliation: Johns Hopkins University School of Nursing,Baltimore,Maryland.
authors.forename: Marie T
authors.initials: MT
authors.lastname: Nolan
mesh_terms: D032722:Advance Care Planning / Q000706:statistics & numerical data* / Q000639:trends; D016223:Advance Directives / Q000523:psychology / Q000706:statistics & numerical data; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology / Q000523:psychology; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data*; D003430:Cross-Sectional Studies; D005260:Female; D005770:Gastrointestinal Neoplasms / Q000453:epidemiology / Q000523:psychology; D006333:Heart Failure / Q000453:epidemiology / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D010190:Pancreatic Neoplasms / Q000453:epidemiology / Q000523:psychology; D010361:Patients / Q000523:psychology / Q000706:statistics & numerical data*; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D019452:Terminally Ill / Q000523:psychology* / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology
keywords: Advance care planning; Advance directives; Caregiver; Terminally ill patients