Abstract
Dear Editor:
In his recent editorial, 1 Morrison states that end-of-life (EoL) care decisions are neither simple, logical, nor linear, but instead complex, uncertain, emotionally laden, and susceptible to rapid change—statements with which we wholeheartedly agree. And although we strongly support the need for critical discussion of underlying assumptions and research conducted about advance care planning (ACP) and advance directives (ADs), we also see a risk in throwing babies out with the bathwater, thereby compounding resource waste.
In Morrison's editorial, ACP and ADs are not clearly differentiated, with an apparent assumption that the foremost goal of ACP is the formulation of ADs. Also, no distinction is made between advance and current care planning. Given that illness is a transformative experience, 2 we agree it is folly to attempt early decisions regarding specific medical interventions. Current medical decisions demand comprehensive discussion with a professional with excellent communication skills, to develop treatment orders tailored to a patient's present circumstances, goals, and values.
We, however, caution for overestimating the role of professionals in the ACP process and medicalization of discussions about EoL values and care. We support the call for a public health approach to upstream ACP by easing and including conversations about EoL values into daily life through engagement of multiple stakeholders. 3 This means in part shifting focus from making binding decisions early on—as in ADs—to preparation of individuals, families, and professionals to facilitate making “the best possible in-the-moment” decisions when they later become necessary. 4 This demands early initiation of a discussion process, and refocusing from product—that is a legal document-driven approach with one individual in isolation, to one focusing on process, that is, engaging those stakeholders who are interested and able in a series of conversations about EoL hopes, preferences, values, and potential care goals. Focus on a clinician's involvement in and documentation of one conversation in a process is naturally both incomplete and inadequate. A focus on product also leads to a faulty assumption that “goal-concordant care”—an outcome that perhaps primarily reflects the needs of professionals to have clear guidance for EoL decision making—is the sole relevant outcome.
Preferences and priorities are situational; instead of conducting expensive, although well-designed studies that demonstrate negative results on outcomes that may be too distant to be feasible, we argue for stringent research based on appropriate real-life ambitions, for example, empowerment of individuals, families, and those who matter to one another, to be able to better communicate about underlying EoL values and develop a shared narrative to inform patient-centered care. We also argue the need to identify outcomes of ACP that are more closely related to its process and not only on its product, and to involve people themselves and their carers in articulating such outcomes.
The covid-19-related distress noted when ACP conversations are lacking, makes the need for a broad public health ACP focus, unhappily apparent. 5 Stopping ACP research and practices, rather than realigning them with community needs, feels like a clear, simple, and wrong approach to a complex problem, particularly at this point in time.