Feeling like a burden: Exploring the perspectives of patients at the end of life

The issue of caregiver burden within the context of end-of-life care has received considerable attention. Less focus has been directed at the corresponding issue of care recipients’ perceptions of being a burden to others, referred to as “self-perceived burden”. The purpose of this interpretative phenomenological study was to gain a better understanding of self-perceived burden from the patientʹs perspective. Fifteen patients (ten women, five men) from Ottawa, Canada, receiving palliative care for advanced cancer were interviewed. Participants’ experiences of self-perceived burden were reflected in two major interrelated categories. “Concern for Others” included the physical, social, and emotional hardships participants believed they were creating for others, as well as concerns about the future and likely effect of their death on those around them. “Implications for Self” reflected feelings of responsibility for causing hardships to others, resulting in distress and a diminished sense of self. A third category, “Minimizing Burden”, was also identified, which described coping strategies used by participants to alleviate the burden on others and to reduce the negative impact on themselves. These categories and themes are discussed from the perspective of social psychology theory pertaining to the maintenance of equity in relationships.