Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty
A multitude of terms
A great many terms were used to describe AEDM within the papers. In part, this was due to the diversity of this review, drawing on papers from 13 different countries. In total the studies used 16 terms: advance directive, written advance directive, advance decision, advance care plan, documented advance care wishes, anticipatory care plan, power of attorney, durable power of attorney, durable power of attorney for healthcare, living will, values history, previously expressed wishes, previously expressed patient wishes, family physician treatment order, resident and family wishes, and familial advanced plan. Some of these terms are legally defined, some are not, (or are inaccurate attempts to reference legal terms) and the latter may be unique to the studies within which they are used. It appears evident that there are areas of overlap between these terms, although there are also important differences; however, exploring these differences, or the legal frameworks of different jurisdictions, is not the focus this paper.
The most common terms were advance directives and advance care plan, understood (in these studies and more generally) to represent respectively legally binding refusals of treatment, and non-legally binding statements of wishes and preferences. The UK uses the term advance decision, rather than advance directive, which is preferred in the USA (and refers to a broader range of advance planning instruments). To avoid ambiguity, we use only the terms advance decision and advance care plan in this discussion, or where both are implied, antecedent end-of-life decision-making.4
The abundance of different terminology used in the literature may give rise to confusion among health care professionals, and one UK study indicated that professionals were unsure of the difference between an advance decision (the legally binding refusal of treatment) and the more generic ‘advance care plan’ [45].