Once upon a time, before church choir practice on Wednesday, my dear friend Carol asked me if I’d be willing to help her get answers to a healthcare question. Well, I am compulsive about helping people, especially in the context of my work. Medical librarian is not just what I do, it is what I am! Of course, I encouraged her to ask her questions, we set up some times to talk more fully, and I did my best.
Her questions were not the ones I expected. My mother had been an LPN part of the time I was growing up, and I found there was a lot of health knowledge that I just assumed everyone knows. My friend was a smart woman, an accountant, and that is an area that is, well, pretty baffling to me and most of my family, so I was always kind of in awe of the things that were easy for her. She was similarly in awe of how I just seemed to magically know things that were alien concepts to her.
I remember one of her early questions in this dialog that ended up stretching over several years. This conversation happened in the back row of the church choir area again, and went something like this.
Her: “What is a lymph node?”
Me: “A lymph node is part of your immune system.”
Her: “What is the immune system?”
Me: “It is how your body keeps you healthy. The immune system fights disease and finds injuries to heal them.”
Her: “Well, darn it, if the immune system is what keeps me healthy, why the heck do my doctors want to take it out? I just had surgery for cancer! If they take out my immune system, how am I ever going to get better?!”
I will admit I was speechless for a moment, but I didn’t let things stop here. We scheduled a time somewhere else to talk about this more fully. I found pictures of the immune system, and tried to explain about cancer staging and how important it was. I told her that her body had many many lymph nodes, and that she could spare a couple of them. I did manage to persuade her that she needed the staging surgery, but when they didn’t find anything she felt a bit betrayed, believing that it had not been necessary. She just didn’t have the context to understand either the good news or the bad news from her health process, and it was scary.
Many families have a particular person who serves as the healthcare “expert” or consultant for the family. When someone in the family has a serious health issue, it is this person who translates the jargon into something the rest of the family can understand, helps people reach a consensus, make and accept treatment choices, comes to appointments if possible, etcetera. I was not a family member, but I was a darn good medical librarian and Carol was a dear friend. I was determined to help her in any way possible, from answering questions to making up new recipes for jams that were high in antioxidants or backing a gift quilt with fleece so it would be soft and not irritate her skin.
We spent a lot of time talking about web searching, recommended health web sites, what was and wasn’t a “trustworthy” source of health information, covering basics and background information, definitions of terms, anatomy, body systems, drugs, side effects, psychological support resources, pain management, insurance, and so much more. She questioned EVERYTHING. She didn’t trust anyone or anything at face value. She drove a lot of her docs a bit nutty, since they didn’t get where she was coming from anymore than she got what they were trying to do.
When she questioned a web site I had recommended we would go back and talk about it. When she came to me with some nonstandard treatment recommended by another friend or relative, I would go off and research it. She made it clear that medical professionals saying it didn’t work wasn’t going to be persuasive to her, so I would find those first to assure me, and then I would go find patient “man on the street” commentary about outcomes to persuade her.
We did not define “evidence” the same way – it was very different for both of us. For me to be any help to her at all, I had to learn to understand how she was seeing the world of healthcare, what was most important to her, what were the barriers, what were the motivators, what did she really WANT. She was an absolutely dynamite teacher in this sense. I listened, then listened more closely, and then listened again because I probably hadn’t gotten it yet. She didn’t want the information that was vetted and approved by the healthcare profession because she didn’t trust them. She assumed it was being sanitized and censored (and to a certain extent that is a valid assumption). She needed to hear the same information from a variety of trusted sources before she’d accept it, and that meant HER trusted sources, not mine.
There was one time when I actually got her to accept a standard medical source the first time around. She had had some uncomfortable side effects from chemo, but her doctor had told her that it couldn’t possibly be the chemo causing it. It happened the first time she had chemo and then the second time the same way as the first time. She was in excruciating pain, and didn’t feel she could face it again. She came to me, and we took a look. She had never been shown the patient drug information insert from the medication packaging, so we looked it up online. I found it on the drug company’s web site, downloaded the PDF and printed it off for her. It showed that the side effect she was experiencing had been reported by about 9% of all patients. Not major, but not impossible either. She took the highlighted printout to her doctor. What happened next shocked me more than her. He doctor took the printout, looked at it, and asked, “Where did you get this?” She told him the Web, and he tore it in two, threw it in the wastebasket, and said, “If it’s from the Internet, it doesn’t count.” When she told me this my jaw literally dropped and I stood there openmouthed.
So after picking my jaw up off the floor and popping my eyes back into their sockets, I gritted my teeth and started looking into techniques for patients to be more effective in how to bring quality health information to your healthcare team. For the record, this happened in 2000, and the Internet was not as mature then, nor was acceptance of it as strong within the healthcare community. Back then, using the Web for healthcare information was still an “emerging technology.” It probably wasn’t a minor factor that Carol had made it clear to her doctors that she was challenging & questioning, what is sometimes referred to as “a difficult patient.” There was a history of communication problems between her and her healthcare team. Still I felt so betrayed, that between me and circumstances she had accepted a high quality health information source without questioning it, and the doctor instead rejected it.
During this time I was working hard on the book Nancy Allee and I had agreed to write for patients about searching the web and using online healthcare information with their healthcare teams. (Believe it or not, that was what the book was supposed to be about when we started it, although it shifted somewhat before it actually went to press.) Part of what inspired me to agree to do the book was my experiences trying to help Carol and wanting to help others in similar situations as well as respecting the patient’s choices in selecting information and making their own decisions regarding their life and death.
Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web. Introduction: Empowering Patients. http://www-personal.umich.edu/~pfa/mlaguide/free/power.html
Carol died as we were coming close to finishing the book. It was pretty shattering to me, and I felt like I had really failed her. I asked one of the docs I worked with at the time about the first time one of his patients died, and we ended up both getting a bit misty-eyed and choked up at the Circulation Desk. I remember Carol had suffered so much pain and that same doc had refused to give her a referral to a pain clinic. I had tried to find a way to get her pain management support, and when she needed it I just had not been able to find it. Ultimately it was that poorly managed pain that forced the choices that shifted her from trying to manage the cancer to palliative care. At least then she could get the pain meds she so desperately needed. A bit after her funeral I was working on the book’s chapter about pain management resources, and found exactly the answers she had needed that I had not been able to find for her. I cried and cried and cried, and then kept writing. I knew in a very intimate way how important that information could be for others.
Kathleen Crea is hosting the next MedLibs blog carnival. She asked for submissions on the theme of “Reference Questions (or People) I Won’t Forget.” To this day I keep discovering more things I learned from Carol that help me be more helpful to others. I expect that will be true for the rest of my life. What could be a better testimonial to a person asking reference questions than that?
To Carol Shaw, 1947-2001,
who asked every possible difficult question
about her illness until she had no questions left,
and who came to represent our model of patient inquiry
for the writing of this book. Her questions
formed the warp and weft on which this book is woven.
“Life is warp, and love is weft:
Children’s hearts and hands are left.”
— L. Larcom, An Idyl of Work, 1875