I've been a reference librarian for the better part of 3 decades now, and am sometimes asked to tell about the most difficult reference question that I've ever had. Some that were difficult in the pre-internet age are a breeze now, others still take time to winnow through much information, much of it containing errors, propaganda of one type of another, or prevarications. However, of all the questions that have been difficult, one from near the beginning of my career still stands out head and shoulders above the others.
It began, as so many of my questions have done, with the phone on the reference desk ringing. "Reference Department, may I help you?" I answered, as on so many, many occasions over the years.
"If I ask you a question about a disease will you tell me exactly what it is and what happens?" said a youngish male voice on the other end of the line.
"As long as I can find information on it I will," I relied, with a sinking feeling in the pit of my stomach.
"I'm 15 years old and I'm sick with a disease. I think it's called ______ (I honestly cannot remember what it was this many years later). My parents and my doctor won't talk to me about it, but I overheard my parents mention it when they didn't know I was there."
"Okay, let me check on it," I replied, and spent a few minutes looking in our standard medical sources. It didn't appear in them, so I then went to The Physician's Guide to Rare Diseases where a 3/4 page entry appeared. As I had feared, it was not good, with a survival rate of 0%, most people dying within 6-8 months of diagnosis.
At this point, conflicting emotions and philosophies whirled around in my head - anger towards the doctor and parents for putting me in this position, sorrow for the boy, uncertainty about whether to tell him or somehow fob him off with half-truths and mumbo-jumbo, dread of having to tell him, and so forth. In the end, I decided that he had called the library looking for specific information, and however uncomfortable and emotional it may be for both of us, I owed it to him, to the library, the profession, and my ethical values to tell him the truth.
When I got back on the line with him, I read him the layman's summary of it, and then asked if he understood what I had just read. "It means I'm going to die soon, doesn't it?" he asked. "It does seem to say that," I replied, "but it is something that you should discuss as soon as you can with your parents and your doctor to make sure that is actually what you have, and there may be other treatments that are being developed that aren't listed in the book."
"I figured it was something like that," he said, "just by the way they've been acting & avoiding my questions. Thank you so much for being honest with me. Now I'll be able to talk to them about it & tell them I know what's happening, and hopefully we can get back to being normal."
As I hung up the phone, I went and took an unscheduled mental health break and thought about this question, as I have done many times over the years. Anger at the parents and doctors is still there, there is always the question of did he have the disease and succumb to it, but always I go back to the relief in his voice when I told him what the disease was and its prognosis, and the knowledge that I did whatever small part I could to help him in what I presume were his final days. With the knowledge that he then had came a power over his disease, and a base to communicate with his doctor and parents.
It began, as so many of my questions have done, with the phone on the reference desk ringing. "Reference Department, may I help you?" I answered, as on so many, many occasions over the years.
"If I ask you a question about a disease will you tell me exactly what it is and what happens?" said a youngish male voice on the other end of the line.
"As long as I can find information on it I will," I relied, with a sinking feeling in the pit of my stomach.
"I'm 15 years old and I'm sick with a disease. I think it's called ______ (I honestly cannot remember what it was this many years later). My parents and my doctor won't talk to me about it, but I overheard my parents mention it when they didn't know I was there."
"Okay, let me check on it," I replied, and spent a few minutes looking in our standard medical sources. It didn't appear in them, so I then went to The Physician's Guide to Rare Diseases where a 3/4 page entry appeared. As I had feared, it was not good, with a survival rate of 0%, most people dying within 6-8 months of diagnosis.
At this point, conflicting emotions and philosophies whirled around in my head - anger towards the doctor and parents for putting me in this position, sorrow for the boy, uncertainty about whether to tell him or somehow fob him off with half-truths and mumbo-jumbo, dread of having to tell him, and so forth. In the end, I decided that he had called the library looking for specific information, and however uncomfortable and emotional it may be for both of us, I owed it to him, to the library, the profession, and my ethical values to tell him the truth.
When I got back on the line with him, I read him the layman's summary of it, and then asked if he understood what I had just read. "It means I'm going to die soon, doesn't it?" he asked. "It does seem to say that," I replied, "but it is something that you should discuss as soon as you can with your parents and your doctor to make sure that is actually what you have, and there may be other treatments that are being developed that aren't listed in the book."
"I figured it was something like that," he said, "just by the way they've been acting & avoiding my questions. Thank you so much for being honest with me. Now I'll be able to talk to them about it & tell them I know what's happening, and hopefully we can get back to being normal."
As I hung up the phone, I went and took an unscheduled mental health break and thought about this question, as I have done many times over the years. Anger at the parents and doctors is still there, there is always the question of did he have the disease and succumb to it, but always I go back to the relief in his voice when I told him what the disease was and its prognosis, and the knowledge that I did whatever small part I could to help him in what I presume were his final days. With the knowledge that he then had came a power over his disease, and a base to communicate with his doctor and parents.
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