Providing Hope: Developing a Viable Regulatory Framework for Providing Terminally Ill Patients With Adequate Access to Investigational Drugs

Abstract

“If I die . . . I want my children to know I did everything I could.” This is a common feeling among terminally ill individuals facing death. This desire to exhaust every option often causes people to fight to receive potentially toxic and dangerous treatments that are still in the investigational phase if the treatment provides even a glimmer of hope for survival or improvement in condition. Investigational treatments, however, expose patients to myriad risks that can be difficult to predict. Jolee Mohr’s mysterious death provides a sad illustration of the dangers of investigational drugs. Mrs. Mohr’s physician recruited her for a clinical trial to test the safety of an investigational arthritis treatment. After she received the investigational treatment, Mrs. Mohr experienced intractable vomiting and increased body temperature. She subsequently slipped into unconsciousness, and her family made the decision to remove life support after doctors confirmed that she had no hope of recovery.