So the doctor came up to me and told me to consent one of his patients on one of our research studies. ALONE.
After a lengthy discussion with the patient, his wife, and his son (who, incidentally, works in a separate oncology research board himself), I began to wrap it up. I thought I had done a fairly good job of being honest about procedures and what outcomes were expected. I extolled mass amounts of information to them all in layman’s terms so they could understand better. There was nothing more to be said and I made motions to leave the room so they could make their decision. I felt satisfied with my presentation. The patient’s wife probably sensed this, too, and decided to ask me the dreaded question:
WIFE: “So how long do you think my husband will live?”
The room fell silent.
ME: “Um, I’m sorry ma’am, I’m not the right person to ask that question. You should direct that question to your doctor. I’m the nurse.”
WIFE: “Yes, but with all this research information you’ve been giving us you should know whether or not he will live longer if he goes into this study.”
Oh crap. I’m going into crap territory. Crap crap crap.
ME: “I understand your concern, ma’am, but technically we have no clue whether or not your husband will benefit from this study. It is merely an option to access an investigational new drug not currently approved by the FDA. We are hoping that it will be more successful than the standard treatments out there, but we don’t know for sure–we’re trying to figure that out ourselves by having your husband as a volunteer. That’s why it’s called research. I only want to offer the program as an additional choice for your treatment options.”
SON: “That’s fine, we will definitely consider it but one of the things that will help us in making that decision would be some statistics on whether or not it would be beneficial to him. Will this new experimental drug help him live longer?”
ME: “There’s no way to really know for sure.”
PATIENT: “I’m not asking for a concrete answer.”
ME: “I don’t want to give you false hope, I’ll get the doctor.”
PATIENT: “No, I want to talk to you. Please give me more information.”
Hmm, maybe a textbook answer will satisfy them:
ME: “The prognosis for melanomas is related to the stage of disease at the time of diagnosis, the anatomic site, the age and sex of the patient, and other tumor characteristics. The National Comprehensive Cancer Network (NCCN), a non-profit coalition of leading cancer research institutions, have speculated on the probability of cancer survival. Your oncologist takes all this into consideration to determine your husband’s prognosis.”
PATIENT: ” Yes, we’ve already talked to the doctor, but you’re the research expert.”
ME: “That’s very flattering, ma’am, but I’m just the research coordinator. I simply make appointments and tell you when to come in to see the doctor and then compile the research data to send to the drug companies.”
SON: “…What frequency did the NCCN organization use to setup the survival data you were talking about earlier?”
ME: “They used a five-year frequency as a standard barometer.”
PATIENT: “Why five years?”
ME: “Because patients who survive past five years tend to do better overall than those who didn’t (obviously) and the length of time procured a somewhat more accurate prediction of their health status than, say, I three-year measurement would.”
WIFE: “Which means what?”
At this point I started to become aggravated. I felt powerful, too, having so much information to contribute, but I certainly didn’t want to overstep my boundaries. It was an addictive feeling, but I knew my limits, and I definitely felt I was walking the edge.
ME: “It means that if your husband lives past five-years it’s a really good sign.”
And this is where I think I dropped the ball. I was hoping that they wouldn’t take this to mean that the patient has exactly five years to live.
I politely excused myself and ran swiftly to the oncologist to ask him to do some debriefing to the patient and his family based on our conversation.