Identifying treatment burden as an important concept for end of life care in those with advanced heart failure

Purpose of review The concept of treatment burden is receiving increasing attention and this review seeks to show that treatment burden is an important issue for end-of-life care in those with advanced heart failure. Recent findings Review of the qualitative literature on patient experience of end-stage heart failure since the year 2000, including 2012, suggests that treatment burden, the work that patients have to do to manage their condition, is a readily identifiable concept in advanced heart failure. Treatment burden relates to four main areas of work, namely: coherence (sense making work) which refers to the work of developing an understanding of the illness (including its implications), treatment and management; appraisal, which refers to the work of judging, monitoring and adjusting treatments; relationship work which describes the effort put into engaging with others for support; and enacting work, that is the effort put into operationalizing treatments, which includes activities such as taking medications, attending appointments, enduring side effects of treatments and dealing with communication difficulties. Summary Treatment burden has the potential to be an important barometer of quality of care from the patient perspective in advanced heart failure.