Return-Path: <nifl-health@literacy.nifl.gov> Received: from literacy (localhost [127.0.0.1]) by literacy.nifl.gov (8.10.2/8.10.2) with SMTP id f9S5BB011784; Sun, 28 Oct 2001 01:11:11 -0400 (EDT) Date: Sun, 28 Oct 2001 01:11:11 -0400 (EDT) Message-Id: <MABBKFDHLFFKFFADLABNOENNCDAA.lpbml@pacbell.net> Errors-To: listowner@literacy.nifl.gov Reply-To: nifl-health@literacy.nifl.gov Originator: nifl-health@literacy.nifl.gov Sender: nifl-health@literacy.nifl.gov Precedence: bulk From: lpbml <lpbml@pacbell.net> To: Multiple recipients of list <nifl-health@literacy.nifl.gov> Subject: [NIFL-HEALTH:3436] Re: Providers assessing literacy level-- W X-Listprocessor-Version: 6.0c -- ListProcessor by Anastasios Kotsikonas Content-transfer-encoding: 7BIT Content-type: text/plain; charset=iso-8859-1 X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) Status: O Content-Length: 8254 Lines: 157 I concur that simply put is not necessarily dummied down; however, simplification may lose important and often essential details which can make the difference in proper treatment and/or diagnosis. A summary is never as good or detailed as the actual source document. I find it more than coincidental that the ethnic affiliation of the doctors that we have dismissed in the last twenty plus years has been from one specific ethnic group. On the whole this group's portrayal of their practice methods has been one of "our way or no way" furthered by their attitude that they are "the best thing since sliced bread." The dismissals within this group have consisted of both men and women and across the age ranges. Not to mention that we also dismissed a realtor from this same group that could not meet our requirements. It is true that patients do not need to be as educated as many patients become to advocate for themselves; however, the less educated they are the less successful the outcome will be. Every patient has the right to understand his diagnosis and treatment options; but, again this leads back to simplification, vital and important details may be eliminated to meet the needs of the uneducated patient. A tiered medical consumer society is created with this approach: those who are educated and have a full understanding of their situation and those that have a marginal understanding which may ultimately be to their medical disadvantage as far as treatment and outcome. Yes, the patient needs to take the responsibility to improve his skills and obtain the help he needs so that the understanding will be more in depth and informative. The best learner is a motivated and receptive one. In the meantime, that's why hospitals provide social workers as patient advocates. Unfortunately, very little research is being done on Nephrotic Syndrome because so few suffer from it. Old protocols and established corto-steroid and chemotherapy are the standards. -----Original Message----- From: nifl-health@nifl.gov [mailto:nifl-health@nifl.gov]On Behalf Of Nancy Arnold Sent: Friday, October 26, 2001 3:32 AM To: Multiple recipients of list Subject: [NIFL-HEALTH:3427] Re: Providers assessing literacy level-- W Information, simply put, is not necessarily dummied down. Nor is the ethnic affiliation of a physician necessarily linked to ability. One does not need to be as educated as many patients become to have the responsibility to advocate for themselves and their children, as well as the right to understand diagnosis, treatment, and options. If a patient can't read medication labels for newly diagnosed diabetes, he or she will be the one making medication mistakes. Health care providers need to understand this. Patients need to accept responsibility for themselves and deserve help and support in doing so. I am truly sorry for the loss of your child. Your pain must be enormous, and of course it is not fair. If my father, brother, and sister had been born 20 years later, perhaps they'd all have lived to be 30, 17, and 12. If my children had been born 20 years earlier, they'd both be dead--instead of 18 and 20--no matter how well I understood their conditions. I hope as much progress will be made in the treatment of nephrotic syndrome as there has been in neurosurgery and embryology. And I hope that smart, dedicated people continue to work on successful health care communication. Who knows where we'll be in 20 years. I'm sure the progress we make in health communication will be saving many lives. >>> lpbml@pacbell.net 10/26/01 12:38AM >>> Jan: Sorry to learn of your husband's diagnosis. I've been in your shoes. When my 14-month-old little boy was diagnosed with Nephrotic Syndrome, I had never heard of the disease. Mainly, because it effects predominantly little boys and the odds of acquiring the disease are beyond belief; 2 boys per year, per 7,000,000, in a population of 100,000. I had better odds of winning the California lottery. The odds of survival were 90%. He was one of the 10%. My husband's first wife had succumbed to cancer before liver transplants were available, which would have saved her life. Breast cancer had metastasized in her liver. He was already a well informed, educated medical consumer because of the long battle they had fought and lost. From the time Lee, our son, was diagnosed we both read, researched, questioned, queried pharmacists, doctors, hospitals etc. We pulled medical research findings, established as well as experimental, contra indications of treatment and medications beyond PDR explanations. Every visit to our doctor was well researched, so we knew what questions to ask, why to ask them etc. We did not expect nor did we receive dummied or watered down information. We learned the kidney's structure inside and out including the layers of the kidney tissues, how they worked to cleanse themselves, what did not happen correctly when remission was not present. Along with this came educating ourselves to the point that we knew when the orders were wrong on the chart. This happened on more than one occasion, because a young ethnically connected male doctor decided he knew a better protocol than the one established by the treating doctor. Had we not been there our son would have died of a stroke because the lasix chaser was being run too quickly (at too high a rate) after the main infusion which increases the blood pressure to a point where the veins burst. We told the hospital to dc all meds and stop the treatment, which included removing the doctor from our son's service. This happened in less than 3 minutes. They knew we meant business. My point is that dummied down literature and medical information gives the patient or patient's advocate little or no backbone to rely on when changes need to be made immediately. You must know your rights, hospital protocol and exactly how to accomplish them to obtain the needed or desired result, in addition to the ailment or illness being treated. Most doctors and hospitals dismiss consumers complaints and questions if they cannot articulate their concerns or desires at a level that indicates their ability to understand a medical practice or protocol. We are only shooting ourselves in the foot to advocate for simplistic, uninformed, dummied down medical information and literature. -----Original Message----- From: nifl-health@nifl.gov [mailto:nifl-health@nifl.gov]On Behalf Of Platte, Jan Sent: Wednesday, October 24, 2001 10:04 AM To: Multiple recipients of list Subject: [NIFL-HEALTH:3419] Re: Providers assessing literacy level-- W Everyone, My husband and I have just traversed a very rocky road with his diagnosis in January of a rare cancer. We are both well educated and I being the coordinator of an adult literacy program am well aware of the problems surrounding this issue of literacy levels in health care. Even well educated folks benefit from explanations in basic language. Once you hear that diagnosis your brain shuts down and you don't process everything you are told. Probably the main reason health care providers tell you to bring someone with you. We appreciated explanations in plain language and guidance on where we might obtain additional information. (I became really good at research on the web.) I don't think giving every person who walks in the door a quick assessment of their literacy skills is a viable solution. Educating providers to be aware that literacy level is an issue and that people often hide the fact that they don't understand the material is a big step. We found most health care professionals we dealt with quickly picked up on our level of understanding as we grew with the process and adjusted accordingly. One RN told the attending physician, "These folks want to know everything." He however didn't think we needed to know everything - that's a whole other discussion. Bottom line, educating health care professionals and well written materials would go a long way in addressing the needs of the patient. My 2 cents worth. Jan Platte Adult Literacy Program Coordinator Westminster Public Library 3705 W. 112th Ave. Westminster, CO 80031-2140 (303) 430 - 2400 ext. 2316 jplatte@ci.westminster.co.us
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