So I’ve told you that Ed (Dr. Merritt) wants to research the signals in the body which cause seemingly undamaged muscles to atrophy when someone is burned. My goal has been to talk to burn victims about his research and ask them to take part in it. The participation is fairly innocuous—it does involve a muscle biopsy, but this is done when the patient is in the operating room under sedation for a burn related procedure, under very sterile conditions. Taking part in this research doesn’t effect the patients treatment in any way—the goal is to seek information, not to perform any kind of alternative treatment. Given this, why do so few patients agree to take part in this research? I believe there are two main reasons for this, firstly they are already overwhelmed with pain and stress, and aren’t able to risk even a small chance of adding to this, and secondly they have a lot of misconceptions about what research is.
Let’s talk about the experience these patients have in the Trauma Burn Intensive Care Unit (TBICU.) Very often after a burn injury, patients must be placed on a ventilator, a machine that breaths for them. In this situation they are usually heavily sedated, and unable to carry on a significant conversation. At this point, the patient’s spouse or other family member can give permission for the patient to take part in the study—but would you feel 100% comfortable making this decision for someone else, even if you personally thought it seemed like a good idea? Most people aren’t. Not all of the patients are intubated and sedated though, some are able to speak for themselves. I want to share a few observations I have made, so that you can relate to what mindset these patients might be in.
I have observed patient asking for food over a 24 hour period, and not being allowed to eat—his health care providers were considering placing him in surgery and didn’t want any food in his system for this reason. After deciding against the surgery, the patient was able to call room service but they remained unresponsive to his request four hours later. After not eating for over 24 hours, and then feeling ignored by room service, would you want to sign up to do a favor for a scientist?
Burn patients often require specialized bandages which are changed daily by a highly experienced team of nurses. In the middle of this bandage change, the health care provider (HCP) is able to observe the injured area. These bandage changes can be extremely painful to the patient, they often receive extra pain medication for this process, but sometimes this does not occur. On occasion the HCP may not be immediately available to observe the exposed injury, and the patient may be left uncovered in a cold room for an extended period of time. I have observed a patient who was nearly screaming while having her bandages removed, and then left shivering and begging for the thermostat to be turned up while waiting an hour for the HCP. After receiving a warm blower, heated blanket, and additional pain medications she was cooperative and good natured. If you felt that the staff at the hospital didn’t care that you were in pain and freezing, when something could be done about both issues, would you want to do a scientist a favor? You might not.
I am only a student nurse, so I can’t know if it is unreasonable that patient care not be more perfect. But I do know that the stress and pain of a traumatic injury, coupled with frustrations over treatment, can easily lead a potential research participant to not consider taking on another role—no matter how innocuous.
Next time I’ll talk about common misconceptions that people have about research, both it’s methods and goals.