Do Advance Care Panning Tools Incorporate Trade-offs About Values? A Systematic Review

Abstract

During serious illness or at the end of life (EOL), patients or their surrogates may need to make difficult decisions about medical treatments. Decisions about treatments such as the use of life-sustaining treatments should be informed by a person's values, sometimes through prior advance care planning (ACP). Well-designed ACP decision-aids help patients recognize trade-offs between values (e.g. having more time versus avoiding machines). Literature shows that patients have difficulty recognizing trade-offs in EOL treatments. We conducted a systematic review of ACP tools to describe how values clarification is addressed in English language ACP tools and how many incorporated trade-offs. We obtained tools from a systematic review published in 2014, then searched literature from 2014-2017. The two authors divided and scanned titles/abstracts and reviewed relevant full text articles to include articles. Using the final included set, we each independently extracted information on characteristics of the ACP tool, whether the values clarification question wording incorporated trade-offs, and we coded the wording according to a published taxonomy of values relevant to EOL treatment decisions. We reviewed each other's data extraction and achieved consensus through discussion. Twenty-seven ACP tools were included. Five tools incorporated trade-offs, almost all by a single item asking about quality versus quantity of life in regards to accepting life-sustaining treatments. The tools addressed: longevity (78%), emotional well-being and relationships (67%), autonomy and independence (63%), adhering to religious or spiritual beliefs (63%), maintaining bodily integrity (59%), avoiding burdensome symptoms (56%), maintaining cognitive function (52%), maintaining physical function (37%), preferred place of death (26%) and not being a financial burden (7%). A minority of ACP tools explicitly incorporated trade-offs when asking patients to consider their values. Attention should be given in developing ACP tools to helping patients recognize trade-offs in values, rather than simply asking which are important.