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

J Hosp Palliat Nurs. 2007 Sep;9(5):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.