Making Healthcare Decisions on Behalf of People in a Disorder of Consciousness. A "Risk-Making" Theory of Decisional Practices.

Abstract

Healthcare decisions evaluate treatment risks and benefits, using a shared decision-making process between patient and clinician. Healthcare workers (HCWs) offer treatments based on condition specific evidence and expert knowledge. The patient evaluates treatment choices from their individual perception of how helpful or harmful treatment might be. This is a "risk-taking" decision. Those in a disorder of consciousness (DOC) have unreliable or absent awareness. They cannot participate in the risk-taking decisional process outlined above. Instead, family members and HCWs evaluate the options and determine how much risk is acceptable. We propose this is a distinctly different decisional process called "risk-making," and that for those in a DOC it is influenced by multiple poorly understood factors. The different ways that decisions are made on their behalf may be negatively impacting their healthcare and creating a distributive justice need. A "risk-making" theory of DOC healthcare decision-making was developed via narrative literature review. It aims to explicate the realities of DOC decision-making practices, and surface rarely discussed assumptions and social factors possibly impacting DOC healthcare for discussion and future exploration.