McPherson Christine J, Wilson Keith G, Murray Mary Ann
Elisabeth Bruyère Research Institute, Ottawa.
Palliat Med. 2007 Mar;21(2):115-28. doi: 10.1177/0269216307076345.
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.
对疾病负担的研究主要集中在家庭护理者身上，很少考虑护理关系的另一方——受护理者对于自己成为“他人负担”的看法。然而，现在有少量但不断增加的证据表明，担心给他人造成负担是临终患者普遍存在且困扰他们的问题。这种担忧被称为“自我感知负担”。本研究对文献进行了系统综述，探讨临终时的自我感知负担。采用标准方法，在姑息治疗及相关领域检索了相关研究文献。综述显示，19%至65%的晚期患者称自我感知负担是一个重大问题。它与尊严丧失、痛苦及“不良死亡”相关。自我感知负担也被认定为危及生命疾病患者加速死亡行为以及临床决策（如临终护理地点的选择、预先指示和治疗接受度）中的一个相关因素。鉴于晚期疾病患者及其家庭面临的独特挑战，有必要对这个研究不足的领域进行进一步调查。
