"I'll Feel Like a Guinea Pig "
The third reason adult cancer patients said they’d decline volunteering for a clinical trial was that they’d feel like “guinea pigs.” I take this to mean that the patient feels “caged in,” without control. Certainly, any cancer diagnosis or treatment may make patients feel this way. While the randomization process to determine which treatment arm is assigned does feel like some loss of control, it is essential for the integrity of the trial. Patients cannot request which treatment arm the computer randomly assigns or over-rule the random assignment. But, while on trial, patients never surrender their autonomy as they may decide to stop treatment at any time, change doctors, or request a different treatment off of the protocol.
An added benefit of trial participation is a layout of the entire planed protocol with a calendar of scheduled treatments, scans, and endpoints. From a control standpoint, trial participants may have more knowledge of their own treatment plan, decision tree, and schedule of events for advanced planning than off of a trial. Trial participants may feel that a protocol written by leaders in the field provides them security knowing they are on the cutting edge of research, especially that they may be on the same protocol offered at large academic centers.
Typically, trial volunteers are motivated to understand the aspect of cancer research that their participation may improve. If their metastatic cancer progresses, then patients and their families may know they volunteered to fight on the front lines of the war on cancer. Knowing that their burden of cancer, grading of their side effects, trial diary, and participating in cutting edge research will advance medicine and potentially save, extend, or comfort lives (including possibly their own) may make patients feel more like a hero with hope, rather than a guinea pig.
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