Keywords

cost of illness, end of life, family relationships, qualitative analysis, terminally ill

 

Authors

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

Abstract

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.