The right to function at end of life: aligning advance care planning with palliative rehabilitation

Movement and bodily autonomy are integral to life and participation in meaningful activities. Current advance care planning (ACP) and advance directive processes do not consistently elicit discussions or documentation about these topics. The problem is especially serious when continued movement increases the risk of falling or other negative health events. This review article integrates available evidence and the authors' clinical experience to argue that ACP should include functional goals and that rehabilitation professionals should be regular members of end-of-life care teams. We address clinical, ethical, and system-level barriers to change and we present a composite case vignette to illustrate the implications and complexities that can occur when function and bodily autonomy are not considered during ACP activities. Rehabilitation providers such as physical therapists, occupational therapists, and speech-language pathologists provide support and interventions to help mitigate risk while facilitating functional independence. However, because discussions around mobility goals at the end of life do not consistently occur, rehabilitation professionals are inconsistently involved as care team members for people who are dying. Without access to rehabilitation, patients may face well-intentioned but overly restrictive care decisions that limit their participation in meaningful life activities. Including functional priorities in ACP, and rehabilitation professionals on care teams, will better align end-of-life care with what dying patients value.