Advance care planning in neurologic illness

Abstract

Advance care planning (ACP) is an essential element of neuropalliative care for persons living acquired brain injuries or progressive, neurodegenerative conditions like dementia. This includes early recognition of these conditions as needing timely ACP conversations to maximize patient autonomy and capacity in early disease, leading to discussions and documentation of patients' values and preferences for future care. ACP involves assessing patient readiness, evaluating decision-making capacity, initiating discussions early and iteratively in the disease course, identifying and preparing surrogate decision makers, and documenting patients' goals-of-care. However, this process presents unique challenges for clinicians and patients' families as individuals lose the ability to meaningfully engage in conversations due to multiple factors related to brain dysfunction. This includes evaluations of capacity for medical decision-making which consider the context in which discussions are held across multiple timepoints with repeated conversations. Research has shown that engaging in early ACP leads to greater goal-concordant care in advanced neurologic illness and affects end-of-life medical decision-making. Clinicians should be familiar with the significance of ACP in this context, understand ways for approaching these difficult discussions with patients and their families, and be aware of evidence-based tools which prepare and aid patients for these discussions. Here, we review ACP in the context of serious neurologic illness and discuss how clinicians can approach conversations with patients and families, ensure patients' values and preferences are documented and available, and explore tools which may enhance the ACP process.

Keywords: Advance care planning; Dementia; Neurodegenerative disease; Shared decision-making; Surrogate decision-making.