December 6, 2012

Call for Blogs on Healthcare Literacy - P1

I know that I need to bring this to everyone's attention. I started getting ideas when I read this blog by Nancy Finn. Right topic and the discussion is needed about health literacy or as she says – healthcare literacy. This is an area needing attention since it affects about one-half of the US adult population. After reading Nancy's blog, I did a search for National Health Literacy Day hoping that I might find something. Nothing for health literacy was located. There is a literacy day in the world that is organized by UNESCO and it is on September 8 of each year. It began in 1966. In 2007 and 2008, the emphasis was on “Literacy and Health.”

While health or healthcare literacy depends on literacy, I could find nothing for a National Health Literacy Day. I did find something about Health Literacy Month, but this was started by Helen Osborne and does not have national recognition. She is trying to have the month of October as health literacy month. There are minimal efforts by a few others, but nothing that is getting recognition.

Other than a few people blogging about health literacy or healthcare literacy, why is this not a topic for more earnest discussion and a wider topic for blogger efforts? True, without the medical professionals participating, this will be a very one-sided conversation. The professional organizations are putting out information to encourage physicians to work to improve communications, but most doctors are so restricted in the time they have with patients that health literacy takes a back seat. Somewhere in the conversation, there has to be an answer. Is it going to require volunteers?

In some hospitals, there are people designated to talk with patients being discharged to make sure they understand all instructions and can repeat them back. When the patient is unable to talk, normally a family member must be present or a friend that can or will be assisting in the care. They in turn must be able to communicate with the person doing the discharge for the patient. Most doctor offices do not have the financial ability to have someone on staff to deal with this, although this should be made part of office staff positions. Even doctors working for the hospitals do not have anyone that is available or capable for communications with the healthcare illiterate. So, in many ways our broken healthcare system does not care about patients that are not health or healthcare literate.

Another problem seldom mentioned is the problems with patients that lack healthcare literacy. Most are very proud people and do not want assistance even though they do not understand what the doctor has told them. Some will reach out for help and are totally ignored by the doctor's staff. I saw this happen one afternoon in the hospital doctor's complex. An elderly man was asking what the papers said that he was handed by the doctor. The nurse just said he was done with his appointment and he should leave. He turned toward me with tears in his eyes. Since I was done checking out after my appointment, I asked the person behind the counter if he had checked out and she said yes. I asked him if I could help and he handed me his stack of papers – six in total including two prescriptions. The nurse saw him hand the papers to me and came over and took them away from me and ushered him out while scolding me that HIPAA prevented me from looking at his papers. HIPAA means the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

I, of course, knew something was wrong and had correctly guessed the person could not read. In the hall outside the office complex, the man turned to me and said, “I can't read.” I asked him how he had gotten here and he said a neighbor had driven him and would be waiting in the car for him. We agreed we should tell this person and we went outside. The neighbor saw us coming and came toward us. I explained what had happened and we needed to go back in and I was going to take them to an office where I knew we could get help. When we arrive at the office, I explained what I had been told and that the person could not read and was asking for help to understand what all the papers meant. I explained the attitude of the nurse and what she had told me. I saw from a look on the secretary's face that she was upset that this had happened. She immediately called her boss and asked him to come out of his office.

When he saw me, I could see him cringe. The secretary said this was something he needed to deal with immediately. I repeated everything and the person said he did not know how to read and was just trying to understand what the papers were saying. His neighbor said who he was and that he did not even know this, but that it explained many things. He said that he would be able to take care of this when he understood what the papers were all about. The administrator looked at me and said, “you brought me a problem that needs being taken care of and I will.” I said thank you to him and turned to leave. Before I had completely turned, a strong hand grabbed my arm and I found myself in a bear hug. The man was crying and trying to thank me at the same time. His neighbor said that now that he was aware of things, he would not let this happen again. The administrator said that he would see that the papers were understood and discuss with them other papers that may be needed to allow the second person to be present at future doctor visits. He also stated that the nurse would be made aware of the correct HIPAA rules and also of the problem she caused everyone.

That evening I received two phone calls. The first was from the administrator to let me know that the situation had been resolved and that the man's wife had always covered for him, but had died the previous month. He said that they would be getting papers to allow two people to be present at all doctor visits, as his neighbor could not always be present. He also said that he had given my number to the neighbor so be expecting a call from them. He had also given them my name and then gave me their names, which I did not have – just their nicknames. As it turns out, even the doctor was not aware he could not read, but now does. The administrator said this was a good lesson for all doctors and that all had been made aware of literacy problems as well as healthcare literacy.

Yes, I did hear from them about half-hour later and the elderly person is not that much older than I am, but had never been in school as he had been overseas during his youth and his parents did not believe in school. He explained what the administrator had told them about me and what a pain in the backside I could be, but this was one time I had done the right thing. They both thanked me for being concerned enough to want to help when I could have walked away. I just said that when the nurse said what she did, it made me angry and I would have helped for sure then, as many use HIPAA as a defense for too many things. I said that once he had handed me his papers, he had made a choice, and HIPAA no longer applied. Both said the administrator had said this as well, but appreciated that I had brought them to him. The neighbor said the administrator told both of them to report any problems caused by staff about either of the two people that would accompany him. I said to make sure they did. They both said that now that they knew where the office was and how he was treated by the administrator, he would not be hesitant to stand his ground.

I did learn one thing that is important to me. I knew there are people that cannot read, but had not realized that I would ever be helping one.

The blog tomorrow will have further information and a request.

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