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Patients' Experiences of Being a Burden on Family in Terminal Illness

Johnson, Julia Overturf BSN, MA; Sulmasy, Daniel P. OFM, MD, PhD; Nolan, Marie T. PhD, RN

Journal of Hospice & Palliative Nursing: September-October 2007 - Volume 9 - Issue 5 - p 264-269
doi: 10.1097/01.NJH.0000289656.91880.f2

Studies of persons with chronic and life-threatening illness have revealed a fear of being a burden on family. The purpose of this case study was to explore that concern in-depth in three persons with different terminal illnesses. Participants were part of a larger study of end-of-life decision making and were selected for this study because their illnesses are characterized by a steady decline in health (amyotrophic lateral sclerosis), a rapid decline (stage IV lung cancer), or an uncertain trajectory of decline (advanced heart failure). Content analysis of their interviews resulted in four themes: managing the burden, spirituality, supportive relationships, and planning for the future. Themes contained specific categories of thoughts, feelings, and actions related to fear of being a burden. These themes should be explored in greater depth in future larger studies of persons with terminal illness.

Author Affiliations: Julia Overturf Johnson, BSN, MA, is a Student, School of Nursing, Johns Hopkins University, Baltimore, MD.

Daniel P. Sulmasy, OFM, MD, PhD, is Sisters of Charity Chair in Ethics, John J. Conley Department of Ethics, St. Vincent's Hospital, Manhattan, and Professor of Medicine and Director the Bioethics Institute, New York Medical College, NY.

Marie T. Nolan, PhD, RN, is Associate Professor and Director of the PhD Program, School of Nursing, and a Core Faculty Member, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.

This study was completed as part of a larger study, "The Natural History of End of Life Decision Making" (M. Nolan, P.I., and D. Sulmasy, Coinvestigator), which was funded by a grant from the National Institute for Nursing Research at the National Institutes of Health (1 R01 NR005224-01A1).

Address correspondence to Marie T. Nolan, PhD, RN, School of Nursing, Johns Hopkins University, 525 N. Wolfe Street, Baltimore, MD 21205 (

© 2007 The Hospice and Palliative Nurses Association