Jessie Kimbrough-Sugick, MD, MPH, Jessica Holzer, MA, and Eric B. Bass, MD, MPH
Researchers who approach community partners with an agenda already in hand are missing the point of the community-based participatory research enterprise: developing priorities for study together.
Though there are channels through which terminally ill patients can access some experimental drugs that have not yet received FDA approval for marketing to the public, in general those drugs must already be proven safe and effective.
Physicians need to help surrogate decision makers to make treatment and end-of-life decisions for those with severe neurological damage by proving a realistic prognosis and maintain strong lines of communication.