Patient-centered decision making in amyotrophic lateral sclerosis: where are we?

Abstract

Developments in amyotrophic lateral sclerosis research and care delivery have created new arenas, and new dilemmas, for patients’ decision making. This review explores three aspects of amyotrophic lateral sclerosis patient-centered care and decision making: patient-centered service delivery through the expanding multidisciplinary team; decision making for genetic testing and the implications of undergoing testing; and development of user-designed decision support tools to help patients and families make decisions as their choices become more complex. Until a cure is found, well-timed and effective decision making will rely on patient and family preferences to guide them through an increasingly complicated disease landscape.