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.

Self-perceived burden, perceived burdensomeness, and suicidal ideation in patients with chronic pain

“…For example, in a review of studies on self-perceived burden among patients with advanced illness, McPherson et al noted an influence on such health decisions as foregoing life-sustaining treatment, preparing advance directives, and choosing hospital vs. home care. 10 Interestingly, however, they also noted a strong association between self-perceived burden and requests for physicianassisted suicide among patients who were terminally ill.…”

“…In the palliative care setting, it has been associated with expressions of a desire for death and an interest in receiving physician-assisted suicide. 2,10,11 In chronic pain, it has been associated specifically with selfreports of SI. 9,12,13 The second body of research is grounded in the interpersonal theory of suicide, 14,15 which proposes that serious SI depends on the emergence of two psychological precursor conditions, namely, thwarted belongingness and perceived burdensomeness.…”

Constructing Understandings of End-of-Life Care in Europe: A Qualitative Study Involving Cognitive Interviewing with Implications for Cross-National Surveys

“…16 Ambivalence regarding being a burden to others, yet wanting to be with them, has been described as creating tension for patients, 17,18 and a systematic review regarding burden and end-of-life care identified burden as concerning for patients in Europe (UK) and beyond (Canada, Japan, Kenyan, Korea, and the United States). 19 Continuing to consider sociorelational aspects in future cross-national EoLC research to establish international priority areas for policy and care therefore remains important.…”

Den autonome veien til egen død

“…Den autonome veien kan ses som en konsekvens av aktiv dødshjelp, der man stadig ønsker (6,7). I en undersøkelse gjort i Nederland (8) beskrives det at det å vaere trett av livet blir forbundet med tap av autonomi, kontroll, verdighet og uavhengighet -man har mistet lysten på livet.…”