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Patient and caregiver characteristics related to completion of advance directives in terminally ill patients

Published online by Cambridge University Press:  30 May 2016

Grace W.K. Ho*
Johns Hopkins University School of Nursing, Baltimore, Maryland
Lauren Skaggs
Johns Hopkins University School of Nursing, Baltimore, Maryland
Gayane Yenokyan
Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
Anela Kellogg
Johns Hopkins University School of Nursing, Baltimore, Maryland
Julie A. Johnson
Center for Research Informatics, The University of Chicago, Chicago, Illinois
Mei Ching Lee
University of Maryland School of Nursing, Baltimore, Maryland
Katherine Heinze
Johns Hopkins University School of Nursing, Baltimore, Maryland
Mark T. Hughes
Johns Hopkins University School of Medicine and Berman Institute of Bioethics, Baltimore, Maryland
Daniel P. Sulmasy
Department of Medicine, the Divinity School, and the MacLean Center for Clinical Medical Ethics, The University of Chicago, Chicago, Illinois
Joan Kub
Johns Hopkins University School of Nursing, Baltimore, Maryland
Peter B. Terry
Johns Hopkins Hospital Department of Medicine, Baltimore, Maryland
Alan B. Astrow
Maimonides Cancer Center, Brooklyn, New York
Jing Zheng
Sun Yat-sen University School of Nursing, Guangdong, China
Lisa Soleymani Lehmann
Brigham and Women's Hospital Department of Medicine and Harvard Medical School, Boston, Massachusetts
Marie T. Nolan
Johns Hopkins University School of Nursing, Baltimore, Maryland
Address correspondence and reprint requests to: Grace W.K. Ho, The Hong Kong Polytechnic University School of Nursing, Hung Hom, Kowloon, HKSAR. E-mail:



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.

Significance of results:

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.

Original Articles
Copyright © Cambridge University Press 2016 

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