Feeling like a burden to others: a systematic review focusing on the end of life

Abstract

Research into the burden of illness has focused predominantly on family caregivers, with little consideration of the other side of the caregiving relationship-care recipients’ perspectives on having become a ‘burden to others’. However, there is now a small but growing body of evidence to suggest that worry about creating burden to others is a common and troubling concern for people who are nearing the end of their lives. This concern is referred to as ‘self-perceived burden’. The present study provides a systematic review of the literature, addressing self-perceived burden at the end of life. Using standard methods, literature was searched for relevant studies in palliative care and related fields. The review revealed that self-perceived burden is reported as a significant problem by 19- 65% of terminally ill patients. It is correlated with loss of dignity, suffering, and a ‘bad death’. Self-perceived burden has also been identified as a relevant factor in death-hastening acts among patients with life-threatening illness, as well as in clinical decisions, such as the choice of place of care at the end of life, advance directives, and acceptance of treatment. Given the unique challenges faced by patients with advanced disease and their families, there is a need for further investigation into this under-researched area.

Keywords

burden end-of-life patient review self-perceived burden

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