Grace W K Ho1, Lauren Skaggs1, Gayane Yenokyan2, Anela Kellogg1, Julie A Johnson3, Mei Ching Lee4, Katherine Heinze1, Mark T Hughes5, Daniel P Sulmasy6, Joan Kub1, Peter B Terry7, Alan B Astrow8, Jing Zheng9, Lisa Soleymani Lehmann10, Marie T Nolan1. 1. Johns Hopkins University School of Nursing,Baltimore,Maryland. 2. Johns Hopkins Bloomberg School of Public Health,Baltimore,Maryland. 3. Center for Research Informatics,The University of Chicago,Chicago,Illinois. 4. University of Maryland School of Nursing,Baltimore,Maryland. 5. Johns Hopkins University School of Medicine and Berman Institute of Bioethics,Baltimore,Maryland. 6. Department of Medicine,the Divinity School,and the MacLean Center for Clinical Medical Ethics,The University of Chicago,Chicago,Illinois. 7. Johns Hopkins Hospital Department of Medicine,Baltimore,Maryland. 8. Maimonides Cancer Center,Brooklyn,New York. 9. Sun Yat-sen University School of Nursing,Guangdong,China. 10. Brigham and Women's Hospital Department of Medicine and Harvard Medical School,Boston,Massachusetts.
Abstract
OBJECTIVE: 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. METHOD: 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. RESULTS: 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.
OBJECTIVE: 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. METHOD: 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. RESULTS: 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.
Entities:
Keywords:
Advance care planning; Advance directives; Caregiver; Terminally ill patients
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