TMI. Too Much Information. That’s what I told my husband last night as we were driving to our favorite Thai restaurant to meet friends for dinner. My book writing has been stymied by just too much information. And most of it was contradictory, incomplete or just plain wrong.
He challenged me and said, “You are a super-specialist. Your field is very narrow. How can you evaluate the nuances of information in other areas that change constantly? You don’t have the expertise.”
I had to think a moment. After all, I agree with the notion that the expert, the specialist, i.e. the physician, is best qualified to understand the medical literature which guides us to make decisions and recommendations to our patients. On the other hand, my feminist radar detected the paternalistic vibrations coming from the “driver’s” seat, in this case both literally and figuratively.
If a trained physician (like me) cannot fully evaluate the information presented to her, how can the non-physician (the patient) be expected to understand and become a partner in medical decision making?
The truth is, in many, if not most cases, a patient’s participation will be quite limited. Many blame the physician for not taking the time to explain. And, yes, there are instances where that may be the case, but at the risk of sounding totally un-PC, the bigger problem is the patients’ abilities to process all the information (and excess information) that comes at them books, newscasts, print media and well-meaning, but often highly misinformed, family or friends. Let’s start with a few rather alarming facts:
The graduation rate from high school in the US today is at 70%.
When writing for our patients and their families, 5th grade reading levels are appropriate. It was only 15 years ago when a 7th grade reading level was our aim.
Less that 50% of what the doctor tells the patient is retained after only a few hours of the consultation. Most written materials provided are simply not read.
Last week a distraught parent and child returned for follow up. A few weeks before, I consulted for her abrupt onset of difficulty swallowing, refusing to take any solids for several months. At the first visit I began to investigate with a preliminary tests and a therapeutic trial for what I believed was underlying acid reflux disease (a/k/a GERD or more specifically for this situation extra-esophageal reflux. This occurs when the stomach contents regurgitate out of the esophagus and into the mouth and throat causing many ear, nose, throat and respiratory problems).
At the first visit, I went over, in great detail, almost reading every word of a carefully written explanation, what my thinking was and why I was suggesting these tests and trial therapy. Mom seemed to listen and she had been very compliant with the testing and said she gave the medication, and followed the diet and lifestyle recommendations.
At this follow up visit she said, “My sister is a school nurse. She said I should ask you if “Susie” has GERD.”
I was stunned. But after I recovered, I asked her if she remembered the information I had gave handed to her just 2 weeks ago. She denied receiving any information! I then showed her the material we scanned into the computer with all the handwritten notes I make to emphasize my points. Then she admitted she didn’t really read it after leaving the office. And I then determined that except for the testing, she really didn’t follow the instructions, which especially for taking the medication, were key to helping her daughter.
I reviewed the material, again. She definitely could read (I thought maybe she was illiterate and was embarrassed). I then became concerned she wouldn’t understand the consent for endoscopy (looking down her swallowing tube), which was the next step in the evaluation. I made her repeat to me what I told her were the reasons for the examination and the possible complications.
What can we reasonably expect the patient/family to absorb, to synthesize, and to remember? Juxtaposing the embarrassing rates of high school graduation with the lack of retention of medical educational material by patients/families, this not a crisis in healthcare. It is a crisis in culture. Basic survival skills of reading and writing are sharply declining. We spend more time reading the instruction book to our cell phones than learning about the ramifications of our behavior for our health. A crisis in healthcare or a crisis in culture? You be the judge.
My Website
Follow me on Twitter
3 Comments
Easy one. This is a crisis in culture and there is no easy answer to it. No matter how much information you give or what form you give it in (even under the best circumstances, as you did here – a mix of written instructions, verbal instructions and even an interactive discussion), many people will not listen to it, will not retain it and will not follow it. Whether you spend five minutes or a half hour discussing it, or whether the instructions are simple or complicated – none of that matters either. You should expect a parent to understand the information, to read it if there are further questions later, and to follow your instructions. This is not a problem in your communication, but rather a problem in the parent’s retention of the information. And, barring some learning disabilities which can be overcome by a mixture of communication methods, there really is no excuse for it.
Compounding the problem is a fundamental lack of personal responsibility. This posting and the one from January 19 (The Future Looks Bleak: Government Sponsored Healthcare) are companion pieces in this regard. Both feature a parent who refused to take responsibility for her child’s wellness. As you pointed out, the parent is the physician’s partner in caring for the child. A doctor cannot be expected to resolve a problem when a parent cancels appointments, does not read, let alone follow, diet and medication instructions or lacks basic common sense (a parent should not have to be specifically told to give a growing child more formula). All of those things are within a parent’s day to day control, not the doctor’s.
Finally, many people’s reluctance to follow the instructions of the very specialist they are choosing to see, coupled with the eagerness to embrace whatever they are told by friends, family and neighbors – none of whom are specialists – is equally troubling.
There are some excellent, well-informed parents as partners in healthcare. That is when the system works best. Sadly, that number seems to be dwindling.
I’m sure you must realize that while the parent may be trying to absorb information and instructions the Doctor is explaining, he/she may simultaneously be trying to comfort the child and gather his thoughts to ask some questions. If the Doctor is relying some unexpected and possibly serious diagnosis, the parent may not be actually “hearing” what he is being said after the first few sentences due to some degree of distress or shock. Of course it is best for the child when the parent writes down concerns and questions ahead of appointment, writes down Doctors instructions during appointment and follows through with them. I have noted that many Doctors seem to resent when a parent has a notebook with his questions. Not you of course! It is sad when the parent does not read information and directions the Doctor provides. The child ultimately suffers. Maybe, the parent would be able to absorb and communicate better with the Doctor if the child went to a play room after the exam while the adults spoke. Other than lack of education, there is no excuse for a parent not being an active participant in his child’s health care due to non compliance.
Wow, such thoughtful (and eye opening) comments. Not all doctors communicate well, and not everyone can process what is said. There are times when the shock of a diagnosis or a crying child who has waited too long to see the doctor can make listening a difficult, if not impossible task.
Coming prepared, with notebook in hand, listening carefully, taking time to think about what you might be asked or want to ask are all part of the patient’s responsibility when he/she enters into this “partnership.” Most doctors try their best, but we all need the help of the patients. Education and health literacy are enormous barriers to good health, perhaps as great or greater than some of the others often touted, such as socioeconomic class or insurance status (although these may be linked they are not totally linked). As our lives become more complicated and the choices expand, the ability to process, retain, and utilize often complex and difficult to understand information becomes ever more important. Are these skills being taught in our schools? In our homes? Shown on TV? Presented on the internet? Sadly, I think you know the answers to my questions.